Let's be honest. No one wants to "live" demented. There ought to be a legal and simple way to end one's life or to authorize another person to do so when we lose the ability to do it ourselves. At this time there isn't, so, having turned 70, I'm beginning to scout out places on an interstate where I can accelerate my car to a high speed and drive off the road, off cliff, in a place where I won't hit another car or land on an inhabited area. And hording pills. And figuring out what diameter plastic hose I need to connect my car's tail pipe to the interior of the car. Etc etc. One of these out to obviate the suffering and costs to myself and/or others entailed in keeping a demented me, should it happen, breathing.
16
This is also true of moms with special needs kids. I belong to several Facebook groups for autism moms, and the level of exhaustion, desperation and isolation is staggering.
14
Being a caregiver was the most difficult and rewarding thing I have ever done in my life. I was glad to do it and happy that I could. My mother and I became a team for ten years . It is called filial piety or respect for the elders . We need to accept the aging process and learn from the experience. We need to have compassion and understanding. At the end of my day there was no place that I wanted to go except home to be with my mother. She meant more than anything and she was worth it all.
12
Thank you for bringing attention to a problem that many choose to ignore, or turn a blind eye to. I saw my mother's friends drop away as my father's dementia advanced, and they no longer participated in the "Saturday night dinners" that marked their social life for years. She was lonely, and though my children and I were constantly present, and I assisted her, caregiver stress is real. (fortunately her Saturday morning beauty parlor welcomed my father). My son - then 10, had to take his beloved grandfather to the bathroom when we went anywhere. Did caregiving contribute to my mother's debilitating stroke? I'll never know. But after caregiving for 15 years, to those who say "oh, you are modeling it so well for your children" I would like to remind them of the family things we were unable to do, because my husband and I were caring for three parents at times. If my children were to "run in another direction" part of me would understand, though I know they will not. And to the social workers who constantly asked me "How does it make you feel?" What a stupid question. The situation is lousy, But it will not change, only get worse. It is 24/7. As though we had choice. I have no regrets about what we did, no matter what the impact on my family, our economic situation, or for that matter, on my career. No one truly understands it until they are living it. But healthcare providers - and those elected in government - please take note. This is a looming crisis.
32
Feeling uncomfortable is part of living. It's a shame the salon owner couldn't stand up to the complaining customers. I had a recent conversation with my stylist and she said other stylists' clients steal from her all the time. They take sprays and shampoos and, if one were to complain, they would lose business. I bet Gene was more worthy of special attention than these well-heeled thieves getting their hair done into their 90s on Michigan Ave. Marcy deserves support and kindness.
5
After reading the article and a good number of responses I thought I would add my 2 cents. I take care of my elderly father, full time. I am lucky in that at 88 he has zero dementia, is essentially wheelchair bound but can stand and walk short distances. We live in upstate NY having moved from near NYC to this log cabin we built in 1972. His retirement income is adequate but after he goes I will have nothing. The mortgage is more or less equivalent to the value of the place and I cannot imagine I will be able to find work appropriate to save my home. Therefore my future is penniless (more or less) and homeless. Kind of hopeless. Nonetheless despite severe limitations to my own physical and social life we are close and happy together and I love it hear. So OK for now but the future looks bleak. Such is life.
17
Though in many ways thankless, caring for elders can be a beautiful & tender thing. For me, a certain psychological growth & capacity to love developed over the 14 years I helmed the illnesses, decline & eventual deaths of my mother, father & uncle. I was unprepared when it all began, but gradually got the hang of it.
Having said that, and now that all’s quiet on the elder front, I’m a bit of a bloody mess.
The stalled career, the lost income & savings, the wrong decisions I made for myself while making endless decisions for the elders: these chickens have come home to roost.
Oh boy. Apparently I’ve become unhireable (at 61). The workplace age thing is real.
After divorcing (early in the eldercare years), I forgot to date. I thought there would be time for that later. Rats. Dating now feels like interviewing for another caretaker job.
I’ve lost my taste for our medical system. Fourteen years of managing the fast advice, pills, side effects, procedures & fine print for elders has made me wary.
I’m a creative soul, if a little frayed & shell-shocked; I’ve got some ideas for my next act & now accept more social invitations.
I know I did a good job for the elders; I'm at peace with that.
What I don’t know is whether or not I’ll ever sit around a table with friends and laugh about getting older. I don’t know if I’ll “dare to wear purple” or – given the financial thing – feel secure about who I am & how I’ve lived my life. Darn. I was looking forward to that.
Having said that, and now that all’s quiet on the elder front, I’m a bit of a bloody mess.
The stalled career, the lost income & savings, the wrong decisions I made for myself while making endless decisions for the elders: these chickens have come home to roost.
Oh boy. Apparently I’ve become unhireable (at 61). The workplace age thing is real.
After divorcing (early in the eldercare years), I forgot to date. I thought there would be time for that later. Rats. Dating now feels like interviewing for another caretaker job.
I’ve lost my taste for our medical system. Fourteen years of managing the fast advice, pills, side effects, procedures & fine print for elders has made me wary.
I’m a creative soul, if a little frayed & shell-shocked; I’ve got some ideas for my next act & now accept more social invitations.
I know I did a good job for the elders; I'm at peace with that.
What I don’t know is whether or not I’ll ever sit around a table with friends and laugh about getting older. I don’t know if I’ll “dare to wear purple” or – given the financial thing – feel secure about who I am & how I’ve lived my life. Darn. I was looking forward to that.
33
Another caregiver here, feeling for your situation and sending lots of support. I agree, a lot of growth comes out of caregiving. Along with shrieking horrors.
10
Overwhelmed. Thank you for this article. I now understand why i remain in the throes of depression even though it's been two years after my mother died. I remain lonely - contact with friends faded away because I was so busy with the caring and my family left it up to me. I fear that once the final distribution of her estate is complete then the family will disperse for good. And yes, I am the single only daughter so I suppose it defaulted to me. Running this article and reading the comments is a huge service to us. Again, thank you NYT and Paula Span.
19
I'm a caregiver to a disabled sister, and for an elderly parent with Alzheimer's. There are times when I feel profoundly alone, especially when it seems that everything is falling apart. My mental and physical health have suffered -- still trying to figure out how to stay healthy while caring for others.
Thanks to the NYT and those who have posted here for the information on organizations to reach out to for help. I hope to see more stories about caregivers and the issues that we face.
Thanks to the NYT and those who have posted here for the information on organizations to reach out to for help. I hope to see more stories about caregivers and the issues that we face.
20
I hope I have the courage to go out alone no matter how painful. I told myself I would never burden anyone with my existence either financially or hold anyone emotionally hostage just so I can live a little longer. I would rather die from falling down my stairs in old age or whatever health condition I have than to beggar my child and/ or cause her undue stress and I will not live in a nursing home. There is no point to life if it comes to that. What purpose could I be serving if my existence is sucking the life out of my child. I know my views are cold but I stand by them.
19
For all caregivers who need to find professional help and advice: there is a wonderful national organization called Aging Life Care, aginglifecare.org. Professional care managers can be found, in your local areas, through this organization to help sort through the difficulties of managing disabilities of love ones in need. We live in a wonderful area full of senior services available to seniors but 'care manager' services are still vital.
6
Great hairstyle, Marcy. Looking good.
8
I wish there were a type of Advanced Directive that we could, of our own free choice, put in place to request assisted suicide if we develop dementia and are no longer competent. Current Assisted Suicide laws require the person to be fully cognizant of their decision. Dementia victims are forced to live out their lives to the last gasp. It's a trap for those of us who don't want to live with dementia.
20
Reading this article makes me feel like one of the lucky ones, my dear old Mother is almost 93, but not hard to take care of. I work part time & she is ok alone as long as I make her lunch & put her pills out. We play a few hands of rummy before I make dinner. I have friends, it's not always so bad to be the sole care giver.
I've kept her out of a nursing home for three and a half years so far and if she does go in one day I can at least feel good about that. Some times "ya gotta do what ya gotta do."
I've kept her out of a nursing home for three and a half years so far and if she does go in one day I can at least feel good about that. Some times "ya gotta do what ya gotta do."
16
One can empathize with the caregiver far more than one can with the friend or family member who falls silent. But one can be even unluckier in fact if the "friend" responds oh so nicely, then acts in person like a bully despite your emotionally vulnerable state. This is bad manners on an epic, sociopathic level, that devastated me at first. Now, my ordeal over, I am, as the once-caregiver, the one who has has done the "cutting off" of any more contact with this quintessentially toxic person if it can be possibly avoided. I would in fact rather be alone in my distress than have what we keep referring to as a "friend" around who will, in an obvious effort to stay in charge, either tries calling the shots, or is even occasionally critical and/or dismissive. This too is a form of hell..
5
Was never a 'real' friend to begin with.
7
I have had that experience. I think some people are like that because they have an unmet need for love and deep down somehow think they will get it from grateful "friends" they have "helped." It can get toxic and can lead to having to cut it off, as you and I have done.
4
Thanks Ellienyc for your insightful comment re "an unmet need for love." I wonder whether the two terms, self-love and narcissism, both cover the same phenomenon: i.e., persons stubbornly incapable of giving or receiving love because they've been emotionally scared as a child by his or her parent or parents. And there they are in our midst to wonder at. They can even, like Trump, become a worldwide obsession.
2
My immature, self-absorbed siblings do not want to hear how psychologically troubled my mother (90 next year) is. When I've tried to talk to my brother he says "You're making my life harder when you go into this." What to do with such self-absorption?
I've discussed this with my physician who says "It's always the child living with the aged parent who sees the worst. Siblings want to be left alone & will refuse to hear about a reality that doesn't suit them."
Meanwhile my siblings call Mom every couple of days and take her out to lunch several times a month. It's impossible to see in these brief interactions how disturbed my mother is now. If they knew how much trouble she's in, they'd be stunned.
When this is over, I'm out of here, am never going to see my siblings again. This has been the greatest shock of my life. So much for 'family.'
I've discussed this with my physician who says "It's always the child living with the aged parent who sees the worst. Siblings want to be left alone & will refuse to hear about a reality that doesn't suit them."
Meanwhile my siblings call Mom every couple of days and take her out to lunch several times a month. It's impossible to see in these brief interactions how disturbed my mother is now. If they knew how much trouble she's in, they'd be stunned.
When this is over, I'm out of here, am never going to see my siblings again. This has been the greatest shock of my life. So much for 'family.'
28
Try to take comfort in knowing that there are many other people out there with experiences similar to yours.
5
Very sad stories here. My wealthy Aunt cared for my Uncle for over ten years as he had Alzheimer's. However, she thought she knew best at all times, and refused everyone's help. Fired people left and right. Defamed them for their care. As well as friends. She is a perfectionist. Anyone that tried to help was ridiculed behind their back. My Aunt wore herself out in the process. But, I don't feel pity for her. Her refusal to engage help, and accept help, led to her exhaustion..
Just accept help when needed. As a caretaker, you are not omnipotent. You can't be as an adult with obligations.
When your relatives are ill, do all you can. And, their is a community to help you as well.
Just accept help when needed. As a caretaker, you are not omnipotent. You can't be as an adult with obligations.
When your relatives are ill, do all you can. And, their is a community to help you as well.
5
Even before my mother started hospice at home, she pulled herself, with her oxygen tank, for me to take her somewhere for a meal and activity. My father had to be coerced out of bed to spend the day at synagogue. Me? I'm appreciating the luxury of privacy before it will be lost.
3
This is why I will commit suicide when I get to the point I can't care for myself with anything more than minimal help with things like grocery shopping . I have no intention of putting my only child through the loss of so much of his life for the extension of a poor quality of mine. I have plenty of assets and could pay for years in a nursing home, but I refuse to live like that and throw vast sums of money down the drain when they could be used to educate grandchildren or go to charities who could make better use of it.
18
So many well-meaning people say this. However, in many cases dementia takes over without the patient 's awareness. The wherewithal to accomplishing what you are planning is often gone when the time comes.
4
alterego, Many people feel the way you do. But by the time the appropriate moment has come, they are no longer able to locate the "hemlock" they have stashed away.
9
Tough, tough, tough, tough. Life can be so hard we can't imagine it.
3
I encourage anyone in this situation to join Well Spouse, a national support group with chapters around the country. I found wonderful comfort, practical advice and friendship at our local meetings. The organization also offers respite days and informational conferences and seminars. Membership is extremely reasonable.
http://www.wellspouse.org
http://www.wellspouse.org
2
Thanks for all your comments, everyone. It helps. I'm just adding my two cents. After a series of family tragedies, I ended up being all my mother had left to care for her over these last 5 years or so. She's almost 95 now, and I'm 70. We live together in a new home in FL now. It took years of pulling teeth, but she finally agreed to sell her home on eastern Long Island. She was a true 1950s professional housewife, devoted to raising us kids, keeping up the home, and cooking. No daytime TV, ever. That still goes. I, on the other hand, lived alone for many years and liked having cable TV on for breaking news. With all the chaos that's gone on over the last couple of years, I have been denied access to that. I have to keep my portable devices handy to be able to keep up. In addition to the social isolation, I'm isolated from the airways too.
8
I retired early to take care of my 87-year-old mother. She died at 92, from a subdural hematoma after her final bone-shattering fall. The ER staff at our hospital knew us well, as we visited there almost monthly due to falls, infections, and heart and kidney problems. In the meantime, my husband's early-stage Alzheimer's had sauntered into mid-stage. It continues a slow slog into late-stage.
Dealing with Alzheimer's is a totally different experience than dealing with physical problems. When we had my mother, I had friends who came for dinner after work and then we all played cards. I had arranged this weekly gathering so my husband and mom had some socialization. I stopped the gatherings after he became too contrary; long-suffering though they were, I couldn't subject my friends to the abuse.
I play Words w/friends and have developed "friendships" with folks around the world who I play against and kibitz with in the comments section daily; it's like having the "pen-pals" of days gone by and has been socialization for me. I did a good deal of volunteering until I felt hubby needed more supervision. I still get out for Mah Jongg. I have the names and phone numbers of NA's from my mother's hospital and rehab stays who were good to her and are willing to do some moon-lighting on their time off to stay with him when I need it. My sister and son help me when I need it, as will my niece.
No one promised me a rose garden. I'm paying the rent for my space on Earth.
Dealing with Alzheimer's is a totally different experience than dealing with physical problems. When we had my mother, I had friends who came for dinner after work and then we all played cards. I had arranged this weekly gathering so my husband and mom had some socialization. I stopped the gatherings after he became too contrary; long-suffering though they were, I couldn't subject my friends to the abuse.
I play Words w/friends and have developed "friendships" with folks around the world who I play against and kibitz with in the comments section daily; it's like having the "pen-pals" of days gone by and has been socialization for me. I did a good deal of volunteering until I felt hubby needed more supervision. I still get out for Mah Jongg. I have the names and phone numbers of NA's from my mother's hospital and rehab stays who were good to her and are willing to do some moon-lighting on their time off to stay with him when I need it. My sister and son help me when I need it, as will my niece.
No one promised me a rose garden. I'm paying the rent for my space on Earth.
12
Your column,“Caregiving Is Hard Enough. Isolation Can Make It Unbearable” ties together the essence of the care giving dilemma.
Alzheimer’s care giving today is part of a something like a cultural condition expanding into our future as the occurrence of Alzheimer’s increases. A sense of isolation may be inevitable but we need to find ways to share the experience as a community. The article makes this plain. The article is also refreshingly truthful about the post-care giving recovery period, presenting itself most deeply at the very moment when the care giving effort seems to have ended. This is when attention to the care giver’s needs is hardest for others to grasp. The third twist to this pernicious braid, of course, is that we are talking about deeply rooted relationships, unpaid.
In particular, in the article the image that I will carry with me is, of course, the evocative and radiant photo of the beautiful Marcy Sherman-Lewis with her husband. Thank you for this.
Alzheimer’s care giving today is part of a something like a cultural condition expanding into our future as the occurrence of Alzheimer’s increases. A sense of isolation may be inevitable but we need to find ways to share the experience as a community. The article makes this plain. The article is also refreshingly truthful about the post-care giving recovery period, presenting itself most deeply at the very moment when the care giving effort seems to have ended. This is when attention to the care giver’s needs is hardest for others to grasp. The third twist to this pernicious braid, of course, is that we are talking about deeply rooted relationships, unpaid.
In particular, in the article the image that I will carry with me is, of course, the evocative and radiant photo of the beautiful Marcy Sherman-Lewis with her husband. Thank you for this.
8
Caregiving for someone who is physically disabled can also be challenging, exhausting and isolating. Going out, finding accessible parking, navigating inaccessible venues which interpret "handicap accessible" to mean all on one level with no concern for displays, tables and chairs arranged with no aisles wide enough for a wheelchair egress, or seeing people around me cringe at my spouse who sometimes drooled or spasmed, was enough to make us stay home. At home, no matter how we encouraged relatives and friends to visit or even stay in touch by e mail, the silence was deafening as it seemed his physical deterioration made so many uncomfortable. The tragedy is that unlike dementia, my spouse was keenly aware of what his illness was doing to our lives as individuals and as a couple.
After 20 years, now I have a new reality-- after so much of my life was defined by caregiving, like an adolescent emerging into the world, I must re-define myself and find where I fit in a society I have long been on the fringes of. It is here where portions of this article resonate-- I find that my years of caregiving have diminished me as a person-- at least when my husband was alive his health and caregiving challenges were reliable subjects of conversation. Friends and social groups have moved on, filling the gap left by our self-imposed isolation. Making myself interesting is a challenge for a natural introvert and inserting myself back into society is a daunting but necessary process.
After 20 years, now I have a new reality-- after so much of my life was defined by caregiving, like an adolescent emerging into the world, I must re-define myself and find where I fit in a society I have long been on the fringes of. It is here where portions of this article resonate-- I find that my years of caregiving have diminished me as a person-- at least when my husband was alive his health and caregiving challenges were reliable subjects of conversation. Friends and social groups have moved on, filling the gap left by our self-imposed isolation. Making myself interesting is a challenge for a natural introvert and inserting myself back into society is a daunting but necessary process.
38
As caregiver for 10 years for my husband with Alzheimer's, I gave everything willingly to the job - including physically to the extent of requiring knee and shoulder surgeries by the end. The other costs (social shunning, isolation - and let's not forget the financial side, draining of retirement funds) have been well documented in this excellent article & comments. There is a vast legacy of damage and pain, from a disease whose main costs have never been covered by health insurance, but left to the families. Even now, the issue is not on the table.
14
Something else that happens to caregivers - if/when you leave the workforce, your contributions to your Social Security account disappear - so your benefits are diminished.
As far as I know, there's no compensation for caregivers. And most caregiving starts when people can least afford to lose a job.
I have a friend who moved in with and cares for her mom so she can't get a regular job. She's in her mid-50s and the stress of not working, taking care of mom and all the appointments, is taking a toll.
But, she has a brother who recently bought a new $300,000 RV and is currently on vacation. He's kind enough to give her every other Wednesday afternoon off - for about 4 hours.
I know she's earned her place in heaven and try to be as supportive as I can be.
As far as I know, there's no compensation for caregivers. And most caregiving starts when people can least afford to lose a job.
I have a friend who moved in with and cares for her mom so she can't get a regular job. She's in her mid-50s and the stress of not working, taking care of mom and all the appointments, is taking a toll.
But, she has a brother who recently bought a new $300,000 RV and is currently on vacation. He's kind enough to give her every other Wednesday afternoon off - for about 4 hours.
I know she's earned her place in heaven and try to be as supportive as I can be.
15
I heard my Aunt say that I should get paid for taking care of my Dad. I'm not sure I agree but the associated financial ruin is real.
6
I am the caregiver of a 21-year-old daughter with severe multiple disabilities. While I still take my daughter on various outings every weekend (favorite being the Bronx Zoo), our world has narrowed sharply from the time she was little. I feel the stares each time we venture out; I feel the loneliness as we venture as a twosome, myself the only person in our group who can speak, always seemingly surrounded by bigger groups of chatting family and friends. Thank you for your meaningful piece.
14
FInally, I am seeing some attention given to caregivers. It is coming too late for me. An only child, I had to take my mother(93 & suffering from Alzheimer's and dementia) when her money ran out for care in an assisted living facility (not the best choice anyway, as they did not monitor her and she frequently went "missing"). Unfortunately, for over a year, her clear moments remembered that I was her daughter and she continued to shower me with the verbal and physical abuse that she punished me with when I was a child. I, at the age of 60, had to quit my job to take care of her 24/7. As I had just moved and bought a house, I did not have a social or business network established. When she passed away 5 years later, I found myself unable to find work (there IS wage discrimination) and without having a "network", just spent hours filling out online applications. Now, at age 70, I was finally able to find work that pays minimum wage and plays havoc with my poor circulation as I stand for 7 hours a day. My house has been in foreclosure once, I have had to drop my gap health coverage, and one meal a day (not as nutritious as it should be) is not helping my heart condition. I am limited by finances in visiting my grandchildren. There have been financial, social and health issues resulting from the years of caregiving. My childhood through abuse --- our system has stolen my golden years. I am not as bitter as this sounds, but it sure isn't how I expected to live at this age.
20
Taking care of a child with disabilities often feels similarly: lonely, isolating. It's harder to go out, strangers often lack compassion for atypical behavior, friends w/neurotypical kids can't relate & drift further away. We as a society need better support systems and a good dose of empathy and kindness all around.
14
My father has been my mother's caregiver for so many years. When he sold his company she became his next job. Like everything in life he has worked tirelessly and for years accepting little help. As the years have gone by and his health deteriorates this has slowly changed. With the exception of doctors appointments or dinner at my house my mom doesn't get out. I am thankful that despite having someone at their house that isn't family they can afford and he has accepted the help of an outside caregiver. She has become my father's lifeline allowing him to leave the house short errands or just go upstairs to his study to listen to music and pay bills. My sisters and I understand and respect his need for independence but are thankful daily that we have found a caring and patient woman who can be there when we can't. There are no easy answers and it is exhausting and sad.
15
This article does not reveal the whole story about caregiving and what happens in the complicated relationships within families. I can speak from personal experience, not as a direct caregiver but one watching the dynamics of how caregiving is compromised when individuals have a hidden agenda and want to come across as martyrs. This article does not address that element of caregiving. Perhaps, another one will.
Aging alone is a complicated process for countless individuals and families, even without the added burdens of dementia and/or Alzheimer's. It is something everyone faces but not everyone will avail of the services available to ease the burden and help families cope. Coping also requires open discussions within families, preparation, consideration and honesty as to the needs of both the caretaker and the individual receiving care is the only way forward. The fields of geriatric psychiatry, psychology and social work need to step up their game and evaluate the entire family situation to glean the weaknesses and strengths. Not everyone needs doping with psychotropic drugs nor should such drugs be used by GPs without appropriate psychosocial evaluations and monitoring by the specialty.
Aging alone is a complicated process for countless individuals and families, even without the added burdens of dementia and/or Alzheimer's. It is something everyone faces but not everyone will avail of the services available to ease the burden and help families cope. Coping also requires open discussions within families, preparation, consideration and honesty as to the needs of both the caretaker and the individual receiving care is the only way forward. The fields of geriatric psychiatry, psychology and social work need to step up their game and evaluate the entire family situation to glean the weaknesses and strengths. Not everyone needs doping with psychotropic drugs nor should such drugs be used by GPs without appropriate psychosocial evaluations and monitoring by the specialty.
3
What stands out for me is your statement about 'aging alone as a complicated process, even without the added burden of dementia.' Thank you for sharing your insight.
1
A caregiver and working at a company, yet the feeling of isolation by going to work does not goes away because no one at work really understands your situation. It just ramps it up, at work you worry about getting days off for medical appointments and what going on at home. Never have attended work functions due to my home responsibilities, co-workers do not understand why and think I am not social.
There are online support group for caregivers, so that helps. One of them is from the Mayo Clinic.
To the caregivers out there, thank you and stay strong. One day at a time, one task at a time.
There are online support group for caregivers, so that helps. One of them is from the Mayo Clinic.
To the caregivers out there, thank you and stay strong. One day at a time, one task at a time.
14
Caring for my father literally killed my mom, and then I was left with the burden of managing his life for seven long years... It consumed my days and nights, my thoughts. I suffered financially, physically and emotionally.I found it to be a very solitary experience. Dad finally passed a year ago, and even though I loved him and miss him, I am so relieved. Bless everyone out there who is going through this. I don't know the answer, but as a society, as individuals, we have to do more to help each other...
46
The degenerating process of growing old is a lonely, painful, humiliating time in people's lives. Because we have essentially taken away nature's tools--harsh as they are--for disposing of the aged. We must find a way to compassionately shorten old age.
17
Yes, doctors keep stretching life out beyond natures intentions. A good thing in some ways. But now, I believe this unnatural want to keep people alive at all costs has become ugly.
We used to call this condition senility. It was rare, because few people lived beyond their 70s.
We used to call this condition senility. It was rare, because few people lived beyond their 70s.
6
People must take responsibility for themselves. Terry Pratchett should be a model for us all.
2
My wife of 52 was finally diagnosed with early onset Alzheimers 5 years ago. We've no family nearby, and three years ago I realized I couldn't continue to work and care for her as she needed, so I opted for an early retirement, earlier than I was ready for emotionally or financially. In the past years I've seen friends "evaporate"; promises of "we'll have you over" or "we'll be sure to come visit" were never acted on, leaving only disappointment with what I thought were close friends. Before I was able to place my wife in a care facility I was using paid care aids to cover for a twice weekly yoga class for me (to help learn how to "de-stress") and an "adult day program" at the facility to provide some respite for caregivers. This outside help provided me with about 14 hr/wk of support or an average of 2hr/day. Both helped tide me over until she was admitted. Since that time March 1, I've spent about 4 hours/day with her at the facility and realize now that I'm a lot more help/use to her than I was when I was looking after her 22hr/day.
Recently a friend from afar stopped by and cautioned that I shouldn't judge other friends/people too harshly for pulling back and leaving me on my own. He likened it to the way people don't know what to say on the passing of a loved one, often defaulting to not saying anything.
The (valid) observation forced me to look at myself and change my own behaviour when others' loved ones pass. I just wish others could learn the same lesson.
Recently a friend from afar stopped by and cautioned that I shouldn't judge other friends/people too harshly for pulling back and leaving me on my own. He likened it to the way people don't know what to say on the passing of a loved one, often defaulting to not saying anything.
The (valid) observation forced me to look at myself and change my own behaviour when others' loved ones pass. I just wish others could learn the same lesson.
39
while i agree that people pull away because they are uncomfortable, not just for no reason, i don't think that gives them a total pass. after all, part of having friends and family is doing the uncomfortable things too. i'm sorry about your wife.
7
I'm 67, My wife is 65. She suffers from a series of neurological maladies which leaves her bedridden and unable to walk for the past 15 years. Mentally, she's fine. I work full time, not out of financial necessity, but because of my mental health. I set my wife up before i leave for work so she has all she needs throughout the day. Family is thousands of miles away. I am always with my phone in case she needs anything. As a caregiver, I probably have it easier than most but I know the toll it takes is real. I have a great deal of respect for those who give so much to make life a bit better for those who suffer. It's exceedingly difficult to compare your situation to someone who is slowly moving away. But it's essential to your well being, as well as theirs, to do so.
11
I've been the primary caregiver for my parents for decades. My father had dementia and ived to bed 103. My parents moved in with me 15 years ago. He was 90 then. He lived 13 more years. Those last 5 years were very hard. My mother remains with me and is still independent coping with her physical ailments. I'm sure they owe their longevity to not living alone and having someone care for their needs, as well a good genes. I don't expect to live to be as old as they are. I've seen it time and again over the years, one adult child takes on the whole responsibility. Usually it's a daughter. After so many years, I don't expect much from friends. I'm glad I have some good neighbors who check in on us now and then. Unless a friend has been a caregiver, they don't get it. I sure wish more restaurants delivered where I live. That would be a help. Hardly any do anymore.
23
Thanks so much for this article. I'm in my 50s - several of my friends have parents with dementia and already one of my friends was diagnosed with early onset Alzheimer's. As a society, we need to get educated and trained on caring for those with dementia and supporting caregivers as quickly as possible.
12
I promised my mom that she would stay at home until the end. She was a nurse and was terrified of being in a "home". She had Parkinson's disease, Lewy-Body dementia, likely cancer, and was 94 years old. She had a pre-paid funeral plan, a financial trust and had a very supportive family. We even remodeled her bathroom for ADA compliance. She had enough money too to let me take two months off of work. An ideal situation in many ways. Hospice only arrived about two weeks before she passed away--at home. She fell 14 times in the last year, was totally confused and I became exhausted. Now, 8 months after her death, I've lost 15 pounds of belly fat--all of which was related to stress. Care giving is the most stressful and the most rewarding job I've had (other than being a parent). I look back and know that I was experiencing depression, grief, exhaustion, and physical weight gain/back pain (from turning her every three hours). I had to manage her 25 pills per day and pain medication. I would do it again but don't want to have that stress again. Killer--stress is.
31
We were lucky that our mothers had enough assets that we could afford good care for them through wonderful memory care (non-profit) facilities. Even so, the hours I spent on insurance billing, doctor's appointments, and simply being there with them were long and often hard. I have the utmost respect for all caregivers, especially those who do not have resources for help and respite care. Our nation can, and must, do better by our elders and their families.
The saddest thing to me were long-time friends who said they would no longer visit, because they wanted to remember them as they had been. How selfish! Our mothers loved visits, even though they forgot them within minutes. A few minutes to bring a dementia patient some flowers picked from a garden, to read them a poem, or to retell an old story mean the world and costs nothing.
The saddest thing to me were long-time friends who said they would no longer visit, because they wanted to remember them as they had been. How selfish! Our mothers loved visits, even though they forgot them within minutes. A few minutes to bring a dementia patient some flowers picked from a garden, to read them a poem, or to retell an old story mean the world and costs nothing.
28
The "friends" were thinking about themselves, but some people just don't get it, until it happens in their own family. It will.
12
I've was helping care for a friend with early onset Alzheimer's and I don't pass judgement on long term friends who were unable to show up consistently. Some people can do it and some people can't. It's especially hard if it's someone who was a good friend for a long time and now their personality has changed negatively. The important thing was that they supported me and the other caregivers in other ways.
8
The patient may not remember the fact that someone visited, but she/he will remember the emotion that someone cared and still considered them worthy of their time. Dementia patients still have feelings and emotional needs, probably more than we know, because they can't express them. They respond to smiles, a friendly voice, someone holding their hand, a back rub. Many also appreciate music. Massages are helpful if the budget allows; they fill the very human need to be touched and stimulate blood flow to muscles and nerves.
As for friends, try not to judge. Everyone is on a different level of emotional evolution. If any are open to hearing they would be welcomed, invite them. Then let go. Use your energy as wisely as you can.
As for friends, try not to judge. Everyone is on a different level of emotional evolution. If any are open to hearing they would be welcomed, invite them. Then let go. Use your energy as wisely as you can.
11
As the parent of an autistic child, much of this article speaks true to my own experiences. Friends and family dropping slowly away, isolation from not leaving the house. Sometimes all it takes is someone to reach out and ask how you are doing for you to snap out of a rut. Caregivers need more support. I totally see that now from my own experience.
18
It is exhausting, expensive, frustrating, completely isolating and tragic from all angles and aspects. Eldercare particularly in cases of dementia/Alzheimers is a brutally annihilating experience for family caregivers in the U.S.A. It would be of great interest to learn how our much more progressive, and socially democratic European allies - northern and southern - deal with their issues of dementia, elderly illnesses, and eldercare. As far as I can tell, the few people I still know in Europe are still leading full lives with parents well taken care of. NYT - could you do a piece comparing our systems?
36
I would like to see that too. I have always had the impression that people in western Europe are willing to pay taxes to provide for things like healthcare, childcare, education and eldercare. Unfortunately, in the US people are always demanding lower taxes. However, I don't think it's just a willingness to pay more taxes, and that is where I would like to see more from the Times. For instance, to what extent to possibly stronger family units play a role (i.e., people keeping elders at home longer). To what extent do different lifestyles and less financial inequality play roles? I don't know, but surely would like to know.
1
Ezekiel Emanuel wrote about this tragic situation in the Atlantic a few years ago, and, strangely enough, was widely criticized for it.
1
I have been a full time caregiver for four years for parents in my home. Now vocal chord cancer is taking my voice. Compounded isolation. The internet is absolutely no substitute for meeting and speaking with people.
14
I hope you can find a group to meet with to get some supportive friendship. You have taken on a lot. Good luck to you.
10
I come at this from a different perspective but one that haunts me, nonetheless. I am the sole caregiver for an autistic son. He is somewhat independent and considered "high functioning." Yet he is not independent enough to live on his own. He is part of an ever-growing population of young adults who will not be able to live without a caregiver. I have much more freedom than many of you writing here. But I fear my old age and my son's middle age. Who will care for him when I cannot? No one in our family wants this burden.
And, I really identify with the isolation of which many of you write. Caring for my son has nearly eliminated my ability to travel (unless he accompanies me, which is always a challenge), or leave home for more than a few hours, or just pick up and go -- anywhere. There is no empty nest, and there are many days when I long for one.
And just as there is no quick fix for caregiving in the case of Alzheimer's or other chronic illness, it is not easy or desirable to "put him in a home." The options are massively expensive and mostly barbaric.
There are hundreds of thousands of parents like me. What are we all going to do as we age?
And, I really identify with the isolation of which many of you write. Caring for my son has nearly eliminated my ability to travel (unless he accompanies me, which is always a challenge), or leave home for more than a few hours, or just pick up and go -- anywhere. There is no empty nest, and there are many days when I long for one.
And just as there is no quick fix for caregiving in the case of Alzheimer's or other chronic illness, it is not easy or desirable to "put him in a home." The options are massively expensive and mostly barbaric.
There are hundreds of thousands of parents like me. What are we all going to do as we age?
39
I shared something similar but nowhere near as eloquently as you put it. I wish you well for the future. Colm
7
When you refer to "a home" do you mean a group home? If you can find a good one it can grant you both the ability to be more independent. Even if he continues to need help it's different than a life with Mom. As there will come a time when Mom is no longer here, your son will have formed a larger community of peers and helpers making him more able to make his way in this world and be better for it.
8
@Sheri
As a mom in a similar situation. I encourage you to look at homes. You might need to look at starting one or moving to a location where you both can retire.
We have built 2 plans and are exploring starting are own. There are many of us out here and organizations who specialize in our children's care. L'Arche USA is one of many.
Peace and hugs to you!
As a mom in a similar situation. I encourage you to look at homes. You might need to look at starting one or moving to a location where you both can retire.
We have built 2 plans and are exploring starting are own. There are many of us out here and organizations who specialize in our children's care. L'Arche USA is one of many.
Peace and hugs to you!
Coincidentally today, I just picked up the book, "My Two Elaine's" by former Wisconsin Governor Martin J. Schreiber ( 2017), describing his caregiving of his wife who has Alzheimer's disease. I have only read the first chapter, but the book's mantra appears to be: Do not try to carry the caregiving burden alone.
He is right. As soon as my mom was diagnosed I organized a family meeting in which I listed all of the things that would need to be done for her social, financial, and medical well-being. My siblings and I decided who could do what, with myself shouldering the bulk of the burden because I lived in the same town as mom. I also got my doctor to prescribe a mild anti- anxiety med for me, which I took for the entire 10 years of her care.
This journey is NOT easy, but if common sense is used and you have a supportive family, you WILL survive. Otherwise? All bets are off!
He is right. As soon as my mom was diagnosed I organized a family meeting in which I listed all of the things that would need to be done for her social, financial, and medical well-being. My siblings and I decided who could do what, with myself shouldering the bulk of the burden because I lived in the same town as mom. I also got my doctor to prescribe a mild anti- anxiety med for me, which I took for the entire 10 years of her care.
This journey is NOT easy, but if common sense is used and you have a supportive family, you WILL survive. Otherwise? All bets are off!
14
I dedicated 15 years of my life to taking care of my mentally ill and physically disabled mother with absolutely zero help of any kind from any of her 9 brothers or sisters or my own sister, even when I begged for help. When other members take care of a loved one and you're not, PLEASE support them. They're taking time out of their own lives in essence, so you do not have to. Please do as much as you can to support them. It should not fall all onto one/a few people's shoulders. That's so totally unfair. Do your part!!
50
I have had the same experience, but believe there is little you can do about it -- especially if there is money to be inherited, a sibling who needs it, and doesn't want the parent to live an "unnaturally long" time.
1
All I can say is " god bless" these giving people.
12
I seriously hope that beauty salon in St. Joseph, Mo. loses business. That is awful.
23
I cared for my wife, diagnosed with Alzheimer's.
Unable to leave her alone, I took her to an AA meeting. They said she had to leave because she couldn't say she had trouble with alcohol. Of course, she couldn't say much of anything by then, so we left.
I won't be back.
Unable to leave her alone, I took her to an AA meeting. They said she had to leave because she couldn't say she had trouble with alcohol. Of course, she couldn't say much of anything by then, so we left.
I won't be back.
27
This made me want to cry in frustration! I hope you have started going back for your own benefit now. With all of the stress you have been under, you likely need the support.
3
And AA says they believe in a higher power! How they could so lack compassion is beyond me. Frankly the others must not have been too bright; it could not have been hard to discern that your wife had mental issues that kept her from speaking up.
1
There are tons of AA meetings nationwide, please try another one. They vary quite a bit from town to town, and even from time to time (morning, afternoon, evening). Try an Open meeting, especially, as they do not require an admission of trouble w alcohol. Don't give up!
1
My husband's an only child, and both his parents are long gone. My father is gone. And I'm sorry, but hell will freeze over before I care for my mother. I'll care for my husband if and when he ever needs it, and I would care for my best friend in a heartbeat. But caregiving is something you do for someone you love. Those who make your life hell do not deserve care. I know some people care for abusive parents regardless, but all that does is give them another chance to ruin your life again, after you've escaped. Just because you have kids doesn't mean they will automatically take care of you when you're old; in my view, you have to love and care for them to get it in return.
32
Yikes.
7
I agree with you, and go a step further and say that if you love your children and/or spouse you wouldn't put this burden on them anyway. If I can't remember who my loved ones are there is no point in someone exhausting themselves for god knows how many years just to keep me alive out of misplaced guilt.
5
So then what is your suggestion? Floating icebergs
Lepper colony?
Lepper colony?
1
My wife was diagnosed with cancer 3 years ago. For most of that time, I was the sole caregiver, until the wonderful people at hospice arrived a few months before her death.
A very few friends were supportive, but, not many. I've heard/read all,of the reasons and explanations. They don't mean much to me. They sound hollow, selfish and cowardly. Her sisters were largely invisible, and, since my wife's death over a year ago I've heard nothing...nothing from either.
My wife said shortly before her death that we thought we had friends, but, what we had was mainly acquaintances. These "friends" could have helped us to carry our burden, but, they were too busy or too afraid. Yep,,I'm bitter.
A very few friends were supportive, but, not many. I've heard/read all,of the reasons and explanations. They don't mean much to me. They sound hollow, selfish and cowardly. Her sisters were largely invisible, and, since my wife's death over a year ago I've heard nothing...nothing from either.
My wife said shortly before her death that we thought we had friends, but, what we had was mainly acquaintances. These "friends" could have helped us to carry our burden, but, they were too busy or too afraid. Yep,,I'm bitter.
48
Sorry to hear that Patrick but thanks for sharing that. Its made me think about whats important and what it means to be a true friend
8
I know exactly what you mean. Except I am not bitter, I'm wounded. Two years after death freed us both, I still feel like I have a huge gaping wound that doesn't heal, inflicted on me by people who I thought were friends and even by my daughter. I was bewildered at the time and remain bewildered since I cannot begin to imagine what allows a person to abandon her mother or her friend at such a time. Some expected me to pick right back up again "after." Nope.
6
Yes, maybe "wounded " is a better term....along with disillusioned.
Nonetheless, my family rallied around, and, I'm very sorry to read that your daughter hasn't. I hope that changes for you.
Nonetheless, my family rallied around, and, I'm very sorry to read that your daughter hasn't. I hope that changes for you.
Doctors seem to be unable to help families. They seem to be timid about addressing issues coming up. I wish my Mother's doctor had been more forward thinking about finding out who was the person designated to help her; talking about things such as driving, self care and when to get care giving help.
9
My parents, in their early 80s, are becoming more isolated in their suburban home. Most of their friends have moved on to retirement center, died, or just don't drive any longer. My parents would benefit enormously from living in "independent" apartments designed for seniors. Sadly, neither are willing to leave behind their "things" and a house they can no longer care for or need. It's sad because the instant community of these apartments and on site assistance would bring all of us some relief.
48
Have your parents visited with their friends in retirement homes or assisted living? They may not be perfect...well, maybe if you are paying top dollar..but they can relieve a tremendous burden for both the elderly people and their children. My mother finally agreed to move into one as she lived alone. She would waffle between saying she hated it, complaining she never should have left her condo and saying she was grateful to be there. Had she accepted her reality and mingled more she would have been happier, but it is not uncommon for people to refuse to see themselves as old.
Couples probably tend to hold on to each other rather than make that move. I help a couple who tried the assisted living route , but returned to their home with agency help. All of it is expensive and no option seems like the right one. It's just a very difficult time in one's life and the longer we live ("thanks" to our medications and health care) the bigger this unsolvable problem will get.
Having lived with the problem and worked with it, one thing is certain to me: no single person should be left caring for another one day after day, year after year. When that happens both lives are lost.
Couples probably tend to hold on to each other rather than make that move. I help a couple who tried the assisted living route , but returned to their home with agency help. All of it is expensive and no option seems like the right one. It's just a very difficult time in one's life and the longer we live ("thanks" to our medications and health care) the bigger this unsolvable problem will get.
Having lived with the problem and worked with it, one thing is certain to me: no single person should be left caring for another one day after day, year after year. When that happens both lives are lost.
4
My mother moved, reluctantly, into an independent living center in the Midwest a couple of years after my father died. Leaving behind her home of many decades and (some of) her 'things' was tough but eventually she made the adjustment and is now happy in her new home, where she has many friends and a range of activities, amenities and services available to her. Her quality of life has improved, and she is safer.
It is important to make this kind of move BEFORE it becomes a necessity.
It is important to make this kind of move BEFORE it becomes a necessity.
3
But your parents don't sound sick, or as if either has dementia.
Just being in their 80s does not mean they HAVE to go live in an institution! Many healthy seniors can manage in their own homes until their 90s, especially if they have help with shopping and cleaning.
Ask yourself, AlexMcC, how much YOU would like to give up your privacy and independence....your "things" -- your hobbies, memories, collectables, books, photos -- to go live in a tiny single room in a sterile institution, and just wait for death?
Some nursing homes are better than others, but they are all institutions -- serve institutional food (that most residents loathe) -- and that "instant community" can have all the charm of a clique-ish Junior High school, complete with mean girls and tables full of residents who won't welcome a new couple. Single elderly women can be VERY resentful of married couples, as they are alone with no chance of re-partnering.
Don't rush your parents into VERY COSTLY Assisted Living! among other things, it will hasten depression, dementia and a lack of interest in living, as such places are VERY depressing and sad. And the cost is enormous; you clearly have no idea. It can easily be 5-10 times the cost of keeping them in their own home!
Just being in their 80s does not mean they HAVE to go live in an institution! Many healthy seniors can manage in their own homes until their 90s, especially if they have help with shopping and cleaning.
Ask yourself, AlexMcC, how much YOU would like to give up your privacy and independence....your "things" -- your hobbies, memories, collectables, books, photos -- to go live in a tiny single room in a sterile institution, and just wait for death?
Some nursing homes are better than others, but they are all institutions -- serve institutional food (that most residents loathe) -- and that "instant community" can have all the charm of a clique-ish Junior High school, complete with mean girls and tables full of residents who won't welcome a new couple. Single elderly women can be VERY resentful of married couples, as they are alone with no chance of re-partnering.
Don't rush your parents into VERY COSTLY Assisted Living! among other things, it will hasten depression, dementia and a lack of interest in living, as such places are VERY depressing and sad. And the cost is enormous; you clearly have no idea. It can easily be 5-10 times the cost of keeping them in their own home!
1
Caregiving takes its toll on caregivers in so many ways. The social isolation, the physical and emotional stressors, the interruption in working years that impacts household income and retirement savings can all take a toll. Even when seeking out respite services, caregivers , particularly those in rural areas, may be challenged by too few adult daycare centers and not enough in-home respite workers to meet demand.
I encourage caregivers to call their local Area Agency on Aging and Disability to see what programs they offer in support of caregivers. Not only do they connect caregivers with various resources, but some may offer some limited financial assistance through a Family Caregiver grant program to arrange for respite services.
I encourage caregivers to call their local Area Agency on Aging and Disability to see what programs they offer in support of caregivers. Not only do they connect caregivers with various resources, but some may offer some limited financial assistance through a Family Caregiver grant program to arrange for respite services.
12
Good advice, Lisa. I attended a Health Fair at a senior center last week and there were several agencies represented. People have to do their research. There is help out there.
Maybe now some of these same baby boomers who dismissed younger workers struggling to deal with their own young family AND aging parents will see just how selfish they were when they demanded the impossible of their subordinates in the workplace.
4
Both my parents and my wife's parents required care. My parents went into the hospital a day apart and neither came out alive. We took care of my mother-in-law for years. Her pension went towards day aide but we were on our own nights and weekends. It just wipes you out emotionally. And we were in our late 40s and early 50s. I can't even imagine being in my 60s and taking care of a 90 year old. And for-profit healthcare guarantees a brutal end of life for many of us. My wife and I talk all the time how miserable our final years will be.
36
In regard to your last sentence - I hope there are many good years between now and then for you both to enjoy together
4
I agree, it is very stressful and very hard on those adult children over 60. Really nobody is up to this task, 24/7.
Assuming you mean your MIL had dementia....I think at a certain point, the individual is better off in a nursing home. It is better for YOU to keep your own health and sanity -- visit frequently -- than to have the entirety of your lives consumed by this.
You mean well, but rational parent would ask a child to sacrifice THEIR OWN life -- health -- finances -- retirement -- to wait hand & foot on the frail, elderly parent.
BTW: I've seen it all kinds of ways, and nobody can game this system. You might live to 99 in relatively good health, or you might drop dead tomorrow. You might get dementia or you might stay completely competent until the end. You might break a hip -- or you might not. No two stories are exactly the same.
Live for today -- enjoy your life while you are still healthy and capable, and let tomorrow fend for itself.
Assuming you mean your MIL had dementia....I think at a certain point, the individual is better off in a nursing home. It is better for YOU to keep your own health and sanity -- visit frequently -- than to have the entirety of your lives consumed by this.
You mean well, but rational parent would ask a child to sacrifice THEIR OWN life -- health -- finances -- retirement -- to wait hand & foot on the frail, elderly parent.
BTW: I've seen it all kinds of ways, and nobody can game this system. You might live to 99 in relatively good health, or you might drop dead tomorrow. You might get dementia or you might stay completely competent until the end. You might break a hip -- or you might not. No two stories are exactly the same.
Live for today -- enjoy your life while you are still healthy and capable, and let tomorrow fend for itself.
3
Grateful to live in a progressive state that allows the assisted-end-to-life. It's about dignity, but also about caring for our loved ones who would suffer taking care of us and watching wither away. God gave us, free will, we have a God-given option to choose how we live and should be able to choose how we die.
We are a rapidly aging country, whose Alzheimer's rates will triple as Baby Boomers age! It will be more costly that all the world wars combined to take care and medicate us!
We, the People need to step up and demand we have choice in dying. In order to alleviate our loved ones responsibility and their own suffering.
God bless all the caregivers! Let's help when we know of someone who could use help, a visit or just a hug.
We are a rapidly aging country, whose Alzheimer's rates will triple as Baby Boomers age! It will be more costly that all the world wars combined to take care and medicate us!
We, the People need to step up and demand we have choice in dying. In order to alleviate our loved ones responsibility and their own suffering.
God bless all the caregivers! Let's help when we know of someone who could use help, a visit or just a hug.
38
This is an honest, heartfelt post. Bravo for you, Mari.
However, as a lawyer dealing with this issue, which the NYT pushes relentlessly, I must note that the organizations promoting physician-assisted suicide always stoutly maintain that it is NOT about the fear of becoming disabled and a burden to one's loved ones, nor at all about the costs of caring for disabled, dependent, ailing elders. Nonethelss, honest posters such as Mari, and the annual reports from Oregon--the first state to legalize physician-assisted suicide--document that fear of becoming a burden, along with fear of losing independence, are the main reasons people ask for doctors' help in killing themselves.
Remember, refusing medical intervention, even life-sustaining treatment, is a long-recognized and well-supported right. That, combined with good palliative care, can avoid painful death. But a period of dependent disability looms for most of us. My disabled clients do NOT want that to become a legally-accepted reason for helping (urging) people to kill themselves.
However, as a lawyer dealing with this issue, which the NYT pushes relentlessly, I must note that the organizations promoting physician-assisted suicide always stoutly maintain that it is NOT about the fear of becoming disabled and a burden to one's loved ones, nor at all about the costs of caring for disabled, dependent, ailing elders. Nonethelss, honest posters such as Mari, and the annual reports from Oregon--the first state to legalize physician-assisted suicide--document that fear of becoming a burden, along with fear of losing independence, are the main reasons people ask for doctors' help in killing themselves.
Remember, refusing medical intervention, even life-sustaining treatment, is a long-recognized and well-supported right. That, combined with good palliative care, can avoid painful death. But a period of dependent disability looms for most of us. My disabled clients do NOT want that to become a legally-accepted reason for helping (urging) people to kill themselves.
10
Unfortunately right to die doesn't work when you have Alzheimers/Dementia. Once you are that ill you no longer have the right to assisted suicide as you are no longer able to make such decisions. The brutal discussion here is getting a diagnosis/prognosis from your doctor (if he/she is willing to do it) on your chances of falling victim to this most horrifying condition. Then being brave enough to choose assisted suicide long before you are in the confusion, pain and throes of these diseases. Not an easy choice I believe. And then it's too late.
8
I wonder how many families can afford memory care? The taxpayer-funded services for the aged could be very helpful for some - assuming the patient will allow outsiders into the house. A difficult patient may not even allow the caregiver to have friends over. And many elderly people don't have computers at home, so support groups on Facebook and the like are of no use. I have an elderly neighbor in this situation, she is trying to care for an elderly husband who abused her for years. He will not allow anyone into their home. The wife is able to leave the house briefly a few times a week at best. He will not allow Social Services to come in to help cook and clean. Their children live on another continent. I see, from some of the comments, that my neighbor is not the only caregiver in a worse situation than the relatively rosy view presented in this article. Not to minimize the scenarios in the article, but it can be much worse. Maybe that's another article.
16
...And I'm struck with how many commenters mention assisted living. I realize a caring relative will still want to spend time, perhaps hours every week, monitoring the elder person's care in such a facility. But how many thousands of dollars a month does assisted living cost? Many families cannot afford that.
22
As far of the cost of assisted living, it can vary from state to state. But in the Midwest it runs around $48,000 to $60,000 annually.
4
The wife may be in need of Adult Protective Services. However, APS involvement may escalate the husband's abuse and APS can sometimes lead to a result that the "protected" person may not want. It can be tricky.
4
better to use the term "care-partner"...
4
"Partner" would suggest an equitable division of the exchange. It is not.
12
“Caregiving is done with a lot of love and affection" Sherman, the gerontologist, says. This is certainly not always the case. There are women who have been abused for years by a now-ailing husband, she stayed because of cultural expectations, or perhaps her fear that if she left, he'd track her down and kill her. And now that they're elderly, the woman feels stuck caring for a husband who may now be too weak to hit her, but their marriage has not improved; the man is entirely dependent on his wife, yet ungrateful and hostile. (The genders could be reversed here, but I'd guess the violent one is usually the man.) I suspect there are many couples where the situation is less dramatic than this, but it is far from loving and affectionate. People don't only remain married because they love and respect each other.
22
Spouses with dementia (or advanced alzheimers) can become physically abusive when they don't want to do something such as get out of the car, for example.
9
One of my neighbors had a few foreign undocumented women taking care of his mother in succession. They were Russian, Spanish. They spoke little English and talked of living in that house 24/7 as though it were a prison.
3
Caregiving Is Hard Enough. Isolation Can Make It Unbearable. I read this article and I definitely agree with the writer. Caregiving is a full time job. It also can be a lonely job. After reading the article I am able to understand how hard it has to be to take care of someone but even harder if you have to do it alone. I am glad to see there are programs out there to help, but I think there should be even more knowledge and awareness for people that don't know about these programs. Let caretakers know that there are resources and they are not alone.
12
Just was at a doctor's office, and two teens were playing an obscenity-laden song full blast in the waiting room.
There is adult day care, but I found out that the local program has a more difficult entrance process than many colleges. It can take up to a year to qualify and spots are very limited.
I hope that people who are caregiving should try Meals on Wheels to get a little social contact, both for their loved ones and them.
Think about the "Moms Groups" where people bring their kids to the park and are able to chat. Caregivers' groups are sorely needed.
There is adult day care, but I found out that the local program has a more difficult entrance process than many colleges. It can take up to a year to qualify and spots are very limited.
I hope that people who are caregiving should try Meals on Wheels to get a little social contact, both for their loved ones and them.
Think about the "Moms Groups" where people bring their kids to the park and are able to chat. Caregivers' groups are sorely needed.
9
I feel bad for Ms Sherman-Lewis. I absolutely will not patronize salons that allow disruptive children and/or play loud music, but I would have no problem at all with her husband, since she says he was not bothering anybody. Well, evidently he was bothering "somebody" and I imagine it was because people are reminded "I could be in her shoes in a few years - or his." Why is there no daycare for adults? Surely someone could profit from a service akin to a daycare facility for children.
22
Eli, there are indeed adult day programs that allow elders to remain living at home, but spend their days with others, making art, participating in discussions and exercise programs, enjoying music, having lunch. Often there is a nurse onsite as well to monitor health and medications. The day care centers usually provide transportation, too.
They're not inexpensive, but they cost far less than assisted living or home health aides, and often states or charities provide some financial support. Veterans also get a break on costs in some states.
I think they're one of the best-kept secrets in eldercare, unfortunately. Here's a link to a post I wrote about them years ago.
https://newoldage.blogs.nytimes.com/2010/03/31/a-reprieve-for-caregivers-and-the-elderly-alike/
Local area agencies on aging will know about nearby day programs.
They're not inexpensive, but they cost far less than assisted living or home health aides, and often states or charities provide some financial support. Veterans also get a break on costs in some states.
I think they're one of the best-kept secrets in eldercare, unfortunately. Here's a link to a post I wrote about them years ago.
https://newoldage.blogs.nytimes.com/2010/03/31/a-reprieve-for-caregivers-and-the-elderly-alike/
Local area agencies on aging will know about nearby day programs.
13
I retired this past June 2017 at 65 years old. Was planning to take vacations, classes,etc. Plans gone to the wayside because my mom is suffering from what appears to be early dementia. She is scheduled to take brain scans to determine how far gone she is. She is still functioning somewhat ok and I registered her in a senior center. She is picked up and dropped of a few days a week to give me a break for now. She is with me now and I feel like a prisoner. However, I am determined to not let this wear me out. I have discussed with my sister who is overseas, that we will take turns looking after her. My mom is 82 years old and not easy to deal with. She insist that i should look after her because of my six brothers and sisters she sacrificed to send me to private school. It was like a future investment she made in me for herself. That is what she repeats frequently. She does not like to stay at home every day. She wants to be out where she can see and talk to other people.
13
Bless you.
4
Like many of people who have written, I am also a member of a club I never thought I would join. I am in a much better position than most, when dad moved in with me, we sold his house and that is paying for the care he gets when I am at work. He did that reluctantly because like most people of his era, his dream was to leave the house to his children so that they could benefit. That's a moot point now.
I'm glad that this money can help him live as independent a life as possible. I take care of his medical care, his finances and I am blessed with friends who have come over to entertain him. We had a blow out 90th birthday for him and my friends came and showered him with attention. He still talks about it months later. He is slowly declining but we make the best of it.
The US must look at our we take care of our elderly. It's a sad state of affairs when middle class folks lose the little savings they have when they end up in a nursing home. Please note that caregiving falls mostly to daughters and daughters-in-law. As a single woman I now worry what will become of me in my old age?
I'm glad that this money can help him live as independent a life as possible. I take care of his medical care, his finances and I am blessed with friends who have come over to entertain him. We had a blow out 90th birthday for him and my friends came and showered him with attention. He still talks about it months later. He is slowly declining but we make the best of it.
The US must look at our we take care of our elderly. It's a sad state of affairs when middle class folks lose the little savings they have when they end up in a nursing home. Please note that caregiving falls mostly to daughters and daughters-in-law. As a single woman I now worry what will become of me in my old age?
102
I am fortunate to be in a non-profit Continuing Care environment where I will be taken care of regardless of my future physical or mental condition. I am currently in independent living, but if I need it, I can move into Assisted Living, Memory Care, or Nursing Care without any increase in my monthly payment. I strongly recommend anyone without children to explore these CCRCs. The time to move into one is before you need it.
16
Thank you for this suggstion; however, you need to have enough of an income to afford this type of care. I am in a situation where I don't have quite enough but have too much to qualify for financial aid.
6
Gwen Solvaag: that's great FOR YOU, but continuing care facilities are very costly and require hundreds of thousands of dollars to "buy in" -- and then monthly costs as much as any Assisted Living facility ($4500 to $8500 a month). The "buy in" is what guarantees you care no matter how sick you get, and indeed,they will keep you in a nursing home, dementia unit or hospice right up to the end. But at an ENORMOUS cost.
Most people simply do not have hundreds of thousands of dollar to "buy in" to such communities. Also: if you buy in, and then die suddenly of a heart attack after just a year in Independent Living....you lose all that money, and your heirs get nothing. So it is a VERY big risk.
Most people simply do not have hundreds of thousands of dollar to "buy in" to such communities. Also: if you buy in, and then die suddenly of a heart attack after just a year in Independent Living....you lose all that money, and your heirs get nothing. So it is a VERY big risk.
Medical science has progressed so that doctors can keep our bodies alive but there is nothing they can do to repair our minds. Alzheimer's and other forms of dementia are a real possibility for all Americans.
We should all hope that their is a good caregiver to take care of us in our old age and that we will be able to afford the cost of this care.
We should all hope that their is a good caregiver to take care of us in our old age and that we will be able to afford the cost of this care.
11
Can we prevent our own dementia?
I desperately hope so.
I read that 1 in 3 cases of Alzheimer's could be avoided through life style changes.
Nutrition. Exercise. Not smoking.
Yes, it's too late for many of us. But, as the generations behind us learn the tenets of healthy living, folks may be spared from Dementia/Alzheimer's.
I desperately hope so.
I read that 1 in 3 cases of Alzheimer's could be avoided through life style changes.
Nutrition. Exercise. Not smoking.
Yes, it's too late for many of us. But, as the generations behind us learn the tenets of healthy living, folks may be spared from Dementia/Alzheimer's.
1
By the way, the U.S. leads other First World countries in Alzheimer's cases. There is now research showing that our addiction to sugar and our lack of sleep contributes to early-onset. It's not just exercise and good nutrition....people need sleep.
4
I expect to be criticized for what I have to say. So have at it.
I spent the last 1/3 of my nursing career as a hospice RN. In those 7 years, the predominant terminal disease qualifying patients for Medicare's hospice benefit was changing from cancer to dementia, Alzheimer's primarily but hardly exclusively. My paternal grandmother died of Alzheimers in the late '70's. Dad dwindled to a mere shadow of himself with rarer form of dementia that stole his ability to speak so gradually it was nearly a decade before we realized it was more than "old age."
At 70, I worry that my family history may be my destiny. In Comments I write, I leave out words that I swear I see when I proofread before hitting the "Submit" button. But when the "Thank you for your submission" message comes up, the missing words become the only things I can focus on as I re-read my thoughts. I lose things. Every day. Every single (censored) day. And I waste more time looking for them than I care to think about.
My step-mom came into their dining area one day to find Dad trying to load an ancient German Mauser, a war souvenir from his days in the Navy in WWII. He made it understood he was "ready." Thereafter, my sisters and I spent thousands of dollars and hours, flying to Florida to help her with his care.
I wish a way existed to allow those with dementia to give permission to their physician and loved ones to put a stop to their --and to their loved ones-- misery.
Please give us that respect.
I spent the last 1/3 of my nursing career as a hospice RN. In those 7 years, the predominant terminal disease qualifying patients for Medicare's hospice benefit was changing from cancer to dementia, Alzheimer's primarily but hardly exclusively. My paternal grandmother died of Alzheimers in the late '70's. Dad dwindled to a mere shadow of himself with rarer form of dementia that stole his ability to speak so gradually it was nearly a decade before we realized it was more than "old age."
At 70, I worry that my family history may be my destiny. In Comments I write, I leave out words that I swear I see when I proofread before hitting the "Submit" button. But when the "Thank you for your submission" message comes up, the missing words become the only things I can focus on as I re-read my thoughts. I lose things. Every day. Every single (censored) day. And I waste more time looking for them than I care to think about.
My step-mom came into their dining area one day to find Dad trying to load an ancient German Mauser, a war souvenir from his days in the Navy in WWII. He made it understood he was "ready." Thereafter, my sisters and I spent thousands of dollars and hours, flying to Florida to help her with his care.
I wish a way existed to allow those with dementia to give permission to their physician and loved ones to put a stop to their --and to their loved ones-- misery.
Please give us that respect.
76
Glen,
I agree with you 100%. My father died of Alzheimer's at 97, almost
ten years after his diagnosis; his mother of Alzheimer's at 93. Genetic
testing shows some of us have a higher than average proclivity to develop the disease.
I too was an RN. The rational choice to exit this life in a dignified
manner remains one of the last taboos. Many of those diagnosed with
dementia have a window of opportunity, while they retain some cognitive ability, to choose a planned death, sparing loved ones years of emotional turmoil and financial devastation. But we're not there yet.
There are clinics in Europe those with enough means and information can turn to for a dignified assisted death. Right now there are only a few places in North America where assisted death is allowed--and then only for those with a diagnosis of six months to live or less, verified by two physicians. Dementia patients may linger for 15 years.
The Canadian federal government is looking at legal changes that would
allow "pre-authorization" of assisted death should one develop dementia
but a decision is probably years away. We deserve to be treated as adults
when considering end of life wishes.
I agree with you 100%. My father died of Alzheimer's at 97, almost
ten years after his diagnosis; his mother of Alzheimer's at 93. Genetic
testing shows some of us have a higher than average proclivity to develop the disease.
I too was an RN. The rational choice to exit this life in a dignified
manner remains one of the last taboos. Many of those diagnosed with
dementia have a window of opportunity, while they retain some cognitive ability, to choose a planned death, sparing loved ones years of emotional turmoil and financial devastation. But we're not there yet.
There are clinics in Europe those with enough means and information can turn to for a dignified assisted death. Right now there are only a few places in North America where assisted death is allowed--and then only for those with a diagnosis of six months to live or less, verified by two physicians. Dementia patients may linger for 15 years.
The Canadian federal government is looking at legal changes that would
allow "pre-authorization" of assisted death should one develop dementia
but a decision is probably years away. We deserve to be treated as adults
when considering end of life wishes.
38
I'm with you. Every. single. day. I told my doctor at least five years ago I was having trouble with words. I literally said that: I am having trouble with words.
Usage slipped first. In writing showed up first, and that was very unlike me, very distressing. For goodness sake, I used to write and proofread for my job! Suddenly, I was typing 'their' instead of 'there,' etc. I would immediately see and understand the error, but couldn't recall typing it. Next was spelling. I used to be, literally, a walking dictionary. People at my workplace would call out to me, passing their office, how to you spell 'xyz word' .. and I would rattle it off. Now, I have to think four times, on simple words, and am never quite sure until I look it up to get confirmation.
I struggle to come up with the right word or phrase, as it seems familiar, but I can't exactly place it either.
Music -- forget it. Favorite songs, lyrics totally gone, and melodies I can't remember. That first concert about 3 years ago, when I was utterly lost, was a real shock to my psyche.
My doctor ignored me five years ago, and every single visit since. Am on my own with this, and so wish to have a humane way out while I can.
Usage slipped first. In writing showed up first, and that was very unlike me, very distressing. For goodness sake, I used to write and proofread for my job! Suddenly, I was typing 'their' instead of 'there,' etc. I would immediately see and understand the error, but couldn't recall typing it. Next was spelling. I used to be, literally, a walking dictionary. People at my workplace would call out to me, passing their office, how to you spell 'xyz word' .. and I would rattle it off. Now, I have to think four times, on simple words, and am never quite sure until I look it up to get confirmation.
I struggle to come up with the right word or phrase, as it seems familiar, but I can't exactly place it either.
Music -- forget it. Favorite songs, lyrics totally gone, and melodies I can't remember. That first concert about 3 years ago, when I was utterly lost, was a real shock to my psyche.
My doctor ignored me five years ago, and every single visit since. Am on my own with this, and so wish to have a humane way out while I can.
14
Jazz one, Dad was finally diagnosed (after multiple visits to multiple doctors, with some form of frontal lobe dementia/deterioration. He was an R&D engineer for John Deere. The classic, almost revered, John Deere 4020 tractor has his fingerprints all over it. He was on the design team that brought that machine to the American farmer. He worked crossword puzzles in ink. Mom used to say of him, "The only thing he can't fix is something that isn't broken."
The crossword puzzles were my first clue. Next was his penmanship (for years I wrote that off to advancing years, but now...?). He had multiple other age-related health problems, but none merciful enough to spare him, and us, the years of slow dwindling away.
Try again. And again. My best wishes.
Glen
The crossword puzzles were my first clue. Next was his penmanship (for years I wrote that off to advancing years, but now...?). He had multiple other age-related health problems, but none merciful enough to spare him, and us, the years of slow dwindling away.
Try again. And again. My best wishes.
Glen
9
While these are observations are not new, having been demonstrated by many scientific studies over the years, it is important to be reminded of this circumstance, look around us and help our family, friends and neighbors in the community. Thank you New York Times.
R Becker, Director LOY/Center for Healthy Living, Inc.
R Becker, Director LOY/Center for Healthy Living, Inc.
18
I have cared for both my in-laws and my parents over the course of 15 years, each with very different needs and circumstances. I agree with many of the comments and the main article about the isolation that one experiences even when you do have support from family or aides. When I hired caregivers or found an assisted living or nursing home, managing them was also a full time job in addition to commuting for frequent visits, managing the finances, doctor's visits, constant insurance paperwork, and monitoring my family member's constantly shifting health conditions.
As I'm sure all caregivers know, a tidy diagnosis of Alzheimer's or Parkinson's is in reality a subset of numerous conditions that change over time and require changing approaches in medical care and support. Just when you feel you've settled one crisis, another one appears even as you try to anticipate the next.
As for the community of professional aides and nurses I have encountered, it runs the gamut of almost criminal negligence to superhuman angels. There are so many gaps in our healthcare system and it varies so widely from community to community that I really couldn't apply what I learned caring for one family member to another. For example, in-home hospice care was exceptional when we cared for my father-in-law in NYC but woefully inadequate caring for my father in another NY county. In the latter scenario, I had to find 24/7 homecare to supplement the inadequate care that hospice provided in the home.
As I'm sure all caregivers know, a tidy diagnosis of Alzheimer's or Parkinson's is in reality a subset of numerous conditions that change over time and require changing approaches in medical care and support. Just when you feel you've settled one crisis, another one appears even as you try to anticipate the next.
As for the community of professional aides and nurses I have encountered, it runs the gamut of almost criminal negligence to superhuman angels. There are so many gaps in our healthcare system and it varies so widely from community to community that I really couldn't apply what I learned caring for one family member to another. For example, in-home hospice care was exceptional when we cared for my father-in-law in NYC but woefully inadequate caring for my father in another NY county. In the latter scenario, I had to find 24/7 homecare to supplement the inadequate care that hospice provided in the home.
63
If your caregiving experiences spanned a decade or more, I wonder if you notice a difference in quality of health care over time. I say this because I definitely noticed a difference/decline in health care "providers'" attitude and also giving access to tests, etc over the last 10 years of my husband's life.
6
I can't say. I felt it depended more on the community in which my family members lived. Vetted and qualified home health aides were next to impossible to find in smaller communites with limited public transportation services and where their pay is so low that most aides can't afford to own a car to commute to their jobs. I had the feeling that all of us - whether patients, caregivers, family members, or healthcare professionals - all of us were trapped in an untenable and inhumane system.
22
Rusty, I too was a caregiver for my mother for over 20 years, 5 at home and the rest of the years in a care facility. She had early on Alzheimers. I went to the Alzheimers Association to take their seminars for caregivers, so I would understand what was ahead of me. From the sessions I learned that "You must take care of yourself first or you will not be able to take care of your loved one" I was reminded that my health and wellbeing was just as important as my mothers for without that I could not sustain what was going to be required of me.
So I made it my goal to find resources in the community that would allow me to take sometime for myself. When my mother had to go to a care facility, I had done my research well ahead of time to find the best ones and I visited them to let them know who she was. Thankfully by the time she needed the care, one of them had an opening.
When I had to place my mother in the facility, I visited everyday, only until I knew she felt comfortable and I felt comfortable with her care. However after that point, I did not visit everyday. I knew that I could not sustain my sanity if I did. I also knew that the care facility employees were not perfect, but I made them aware that I would be there for my mother and that I would be actively involved in her care and I was.
You have to put the care of yourself first also, no one else will do it. Caregiving is a tough and tender responsibility.
So I made it my goal to find resources in the community that would allow me to take sometime for myself. When my mother had to go to a care facility, I had done my research well ahead of time to find the best ones and I visited them to let them know who she was. Thankfully by the time she needed the care, one of them had an opening.
When I had to place my mother in the facility, I visited everyday, only until I knew she felt comfortable and I felt comfortable with her care. However after that point, I did not visit everyday. I knew that I could not sustain my sanity if I did. I also knew that the care facility employees were not perfect, but I made them aware that I would be there for my mother and that I would be actively involved in her care and I was.
You have to put the care of yourself first also, no one else will do it. Caregiving is a tough and tender responsibility.
119
Alzheimer’s disease, at 79? Do Nytimes editors ignore Alzheimer’s disease Inherited Real Risk? Well. Starting from birth, physicians ca bedside recognize with a common stethoscope in a quantitative way such as predisposition to Alzheimer disease and remove it by means of Reconstructuring Mitochondrial Quantum Therapy, used in a personalized manner. References on request of Nytimes Editors.
2
As nice as that sounds, many people couldn't afford such therapy even if it were approved in this country. So we need interventions that help many people cope. There are different kinds of dementia but all of them can isolate the caregiver, who is what this article is about.
7
Advice on LTC insurance from someone who was a caregiver: Keep detailed records of everything and try to have one contact person who is familiar with you and your case.
When I was the caretaker 12 years ago, all records were sent on paper, and they were "never received" -- until I learned to send everything as certified mail. After that, things proceeded relatively smoothly. This was a large, respected, nationally-known insurance company that my father had paid for years.
I realize that these records must be sent electronically now, so it is harder to "not receive" them, but I developed a deep distrust of insurance companies and encourage you to be on your guard.
I know that this is asking a lot, when you're dealing with loved ones who are slipping away from you, meeting their physical, emotional, and medical needs, and, if you're fortunate, scheduling and supervising caregivers who are there while you're at work.
If you can manage to examine your bills, you could save funds you will need later, because the insurance industry exists for one reason only -- to make money.
Everything I have read in this article and the comments brings back memories, still fresh really, and I send my support and encouragement to all who are giving so much of themselves and their lives. It it exhausting on every level. It is lonely. When it is over, there is a gaping hole in your heart and your life, and a sad sort of relief. At some point, you will be grateful for the good memories.
When I was the caretaker 12 years ago, all records were sent on paper, and they were "never received" -- until I learned to send everything as certified mail. After that, things proceeded relatively smoothly. This was a large, respected, nationally-known insurance company that my father had paid for years.
I realize that these records must be sent electronically now, so it is harder to "not receive" them, but I developed a deep distrust of insurance companies and encourage you to be on your guard.
I know that this is asking a lot, when you're dealing with loved ones who are slipping away from you, meeting their physical, emotional, and medical needs, and, if you're fortunate, scheduling and supervising caregivers who are there while you're at work.
If you can manage to examine your bills, you could save funds you will need later, because the insurance industry exists for one reason only -- to make money.
Everything I have read in this article and the comments brings back memories, still fresh really, and I send my support and encouragement to all who are giving so much of themselves and their lives. It it exhausting on every level. It is lonely. When it is over, there is a gaping hole in your heart and your life, and a sad sort of relief. At some point, you will be grateful for the good memories.
41
My 90+yo MIL lived w/us for 16 months, during which time her dementia became apparent and grew progessively worse, until we moved her into memory care. It was an illuminating experience - heped enormously by my finding online support and information - and a sense of community at https://www.agingcare.com/caregiver-forum. I tell EVERYONE with an elderly parent to check out this site. It helped us tremendously!
BTW - caregivers in the US provide an estimated $5 Billion annually in UNcompensated care for family and freinds.
BTW - caregivers in the US provide an estimated $5 Billion annually in UNcompensated care for family and freinds.
30
To CC in NY: Thanks for putting it out there so clearly.
You speak for and to a lot of people, me among them.
You speak for and to a lot of people, me among them.
5
Wow, another great article in the NYT, well worth my online subscription. I am in Australia and attempted to provide support to my very disturbed alcoholic schizophrenic son for over 20 years until he died last year in palliative care, from organ failure, aged just 40. Can relate to all the experiences here. It sure put my life on a different course: I lost a career and a home and am in the early stages of dealing with my grief. But this article and the comments makes me realise my experience was not at all abnormal but in fact quite typical for a caregiver. Strangely, it is very comforting. I'm not sure we have long term care insurance here but I am certainly going to look into it for myself. Meanwhile I now know I have earned the right to still be in my dressing gown at midday and enjoying my daily wine. I am utterly exhausted.
56
Caregiving is a critical issue and not just for those caring for aging or ill spouses. And it is true that those with resources can hire amazing caregivers -- even teams of caregivers. They can turn their homes into nursing facilities.
Yes, Alzheimers is a dreadful disease. But, we have the spouses of returning soldiers who are also caregivers. And, that is difficult too. These caregivers have decades of caregiving before them, including spouses or family members that can have psychological ailments and PTS. We need to do more for caregivers. Nursing homes are not the answer, especially for younger people afflicted with infirmities or PTS or other war-related illness.
We have to address these issues now because we have an aging population and the time for reflecting on this is now.....
Yes, Alzheimers is a dreadful disease. But, we have the spouses of returning soldiers who are also caregivers. And, that is difficult too. These caregivers have decades of caregiving before them, including spouses or family members that can have psychological ailments and PTS. We need to do more for caregivers. Nursing homes are not the answer, especially for younger people afflicted with infirmities or PTS or other war-related illness.
We have to address these issues now because we have an aging population and the time for reflecting on this is now.....
26
http://www.pbs.org/independentlens/films/mimi-and-dona/
The film listed above, Mimi and Dona, was a wonderful, sad documentary about an elderly mother caring for her disabled adult daughter. I encourage everyone to watch it, especially because it turns the tables for those who think only children care for their aging parents. This mother gave her life for her daughter, as do most parents who care for their disabled children.
Being a caregiver is a tough life when there is no one else to help out. It's just as hard when the caregiver is single, but has married siblings with families, and yet, everyone expects the "singleton" to be the one giving up a life and caring for the parent. Totally unfair.
The film listed above, Mimi and Dona, was a wonderful, sad documentary about an elderly mother caring for her disabled adult daughter. I encourage everyone to watch it, especially because it turns the tables for those who think only children care for their aging parents. This mother gave her life for her daughter, as do most parents who care for their disabled children.
Being a caregiver is a tough life when there is no one else to help out. It's just as hard when the caregiver is single, but has married siblings with families, and yet, everyone expects the "singleton" to be the one giving up a life and caring for the parent. Totally unfair.
35
Congress has deliberately turned a blind eye to the home caregiver problem for so long that it's now literally breaking over our heads -- and for a reason.
Rich people (aka "compassionate conservatives") hire home-care aides for their elderly parents and grandparents three shifts per day, 24/7, so they know what it costs. But they can afford it. And they can do the math. Extending an assisted-living benefit, styled an "entitlement", to tens of millions of Americans and their families means higher taxes for them. It cannot be otherwise.
They don't want to pay taxes. They arrange their financial affairs to pay as little as possible. So, they would rather throw all those Americans, their suffering spouses and children under the bus while spouting craven, sanctimonious pieties about the "limited role of government", or "there is no Constitutional right to healthcare" to any idiot who will listen. This, while quietly backing politicians who support this and their other special interests; the true measure of their actual compassion, and their "Americanism".
Congress and state legislatures are pretty much their creature these days because "money talks". So, federal and state governments mostly ignore the gist of the problem. No resources, and no mandate.
No "public mandate". Officially, "it's your problem".
This is why most Americans can't obtain adequate home-care assistance, also why Sen. McConnell performed all those bizarre gyrations last month trying to destroy Obamacare.
Rich people (aka "compassionate conservatives") hire home-care aides for their elderly parents and grandparents three shifts per day, 24/7, so they know what it costs. But they can afford it. And they can do the math. Extending an assisted-living benefit, styled an "entitlement", to tens of millions of Americans and their families means higher taxes for them. It cannot be otherwise.
They don't want to pay taxes. They arrange their financial affairs to pay as little as possible. So, they would rather throw all those Americans, their suffering spouses and children under the bus while spouting craven, sanctimonious pieties about the "limited role of government", or "there is no Constitutional right to healthcare" to any idiot who will listen. This, while quietly backing politicians who support this and their other special interests; the true measure of their actual compassion, and their "Americanism".
Congress and state legislatures are pretty much their creature these days because "money talks". So, federal and state governments mostly ignore the gist of the problem. No resources, and no mandate.
No "public mandate". Officially, "it's your problem".
This is why most Americans can't obtain adequate home-care assistance, also why Sen. McConnell performed all those bizarre gyrations last month trying to destroy Obamacare.
149
Obamacare doesn't cover LTC or home health care I don't believe.
2
Very much mistaken. It completely depends on plan and individual circumstance but many home care individuals lives have been improved by ACA.
3
You are probably thinking of Medicare, which, you are right, provides very little for long term care (just some time-limited rehab.) But Obamacare was mostly about Medicaid, anyway, not so much Medicare.
By extending Medicaid, Obamacare strengthened our (still inadequate) federally-funded long-term care, both for disabled people and for, eventually, most elderly nursing home patients after they have "spent down" to become eligible. In particular, Medicaid pays for in-home, patient-directed care for people with disabilities. It's a slender reed, but the Republicans' attack on it provoked some of the most effective resistance and in-person demonstrations, from people with disabilities who depend on the Medicaid-sponsored in-home care to stay in their homes rather than in a (far more expensive) nursing home.
By extending Medicaid, Obamacare strengthened our (still inadequate) federally-funded long-term care, both for disabled people and for, eventually, most elderly nursing home patients after they have "spent down" to become eligible. In particular, Medicaid pays for in-home, patient-directed care for people with disabilities. It's a slender reed, but the Republicans' attack on it provoked some of the most effective resistance and in-person demonstrations, from people with disabilities who depend on the Medicaid-sponsored in-home care to stay in their homes rather than in a (far more expensive) nursing home.
7
I took a dementia patient clothes shopping at a Talbots down South. She was in high spirits, confused, forgetting which clothes she had already tried, exclaiming loudly, but we found several outfits. After we had paid and were preparing to leave, one of the saleswomen pulled me aside, looked me in the eyes and whispered, "You were SO great with her; she is so lucky to have you."
I hope the salon owner in the article is reading.
I hope the salon owner in the article is reading.
214
And you were blessed with a super saleswoman!
42
Bless you!
7
What about parents playing the same role for their children, disabled through accidents, illness, mental health and physical health problems? There is no end in sight and care-giving is seen as not only your duty but something society thinks you should solve alone.
74
Not everyone in society thinks you should solve it alone. Many of us know that when one of us suffers, all of us are affected. And many of us believe we should treat our neighbor as we would want to be treated. We may be in the minority now, but our ranks will grow as the country ages.
17
The same things occur with people who don't have jobs. We no longer have a place to go and no one wants to hear about our woes looking for a job. And it's the same too for siblings/families of the handicapped. We often stop interacting with others because it's a drain to have to explain over and over again why the person is the way he or she is and to listen to unsolicited advice.
In America we tend to ignore problems and problematic people. It's easier to hide them or make fun of them or blame them. I know because I've experienced all of it. I've had people deliberately misunderstand my brother's behavior. I've been and am currently unemployed. My family was abusive. I learned not to talk to anyone about these things. Am I lonely, yes. But at least no one makes fun of me or oozes false sympathy or tells me it's my fault.
We don't do empathy, help, or understanding well in America. That's the problem of being a country that believes in the myth of complete self sufficiency.
In America we tend to ignore problems and problematic people. It's easier to hide them or make fun of them or blame them. I know because I've experienced all of it. I've had people deliberately misunderstand my brother's behavior. I've been and am currently unemployed. My family was abusive. I learned not to talk to anyone about these things. Am I lonely, yes. But at least no one makes fun of me or oozes false sympathy or tells me it's my fault.
We don't do empathy, help, or understanding well in America. That's the problem of being a country that believes in the myth of complete self sufficiency.
134
Where did the myth of complete self-sufficiency come from? We couldn't have come this far without each other. The more I think about it, self-sufficiency sounds like complete hogwash.
My father had Lewy Body Dementia, and I would take him to lunch so my mother could get a break. People at the restaurant were kind. They held doors, they understood. I didn't act ashamed, just helped him to his seat and helped with getting food. Our conversation was wild and didn't always make sense, but he enjoyed the outing and my mother got a break. On a different occasion, I sat with dad at a social event, while mom caught up with old friends. Kind people came over to say hello.
I understand how debilitating social isolation of caregivers can be. Mom wanted to retreat at first. She was able to take Dad to her hairdresser, and her priest gave her the gift of visits and interesting conversations.
One must swallow pride and not hide the elder or disabled person. One must stay in touch by phone or email to stay in the world. One must resist self-pity. We are not alone if we reject the self-sufficiency myth and come together to defeat isolation. Embarrassment is a luxury that hurts caregivers. We need to laugh at our foibles and help others--who knows when it will be our turn?
My father had Lewy Body Dementia, and I would take him to lunch so my mother could get a break. People at the restaurant were kind. They held doors, they understood. I didn't act ashamed, just helped him to his seat and helped with getting food. Our conversation was wild and didn't always make sense, but he enjoyed the outing and my mother got a break. On a different occasion, I sat with dad at a social event, while mom caught up with old friends. Kind people came over to say hello.
I understand how debilitating social isolation of caregivers can be. Mom wanted to retreat at first. She was able to take Dad to her hairdresser, and her priest gave her the gift of visits and interesting conversations.
One must swallow pride and not hide the elder or disabled person. One must stay in touch by phone or email to stay in the world. One must resist self-pity. We are not alone if we reject the self-sufficiency myth and come together to defeat isolation. Embarrassment is a luxury that hurts caregivers. We need to laugh at our foibles and help others--who knows when it will be our turn?
26
You have courage and nerve. But you didn't live with your father's problems all your life. I'm not downplaying the severity of his illness or the effects it had. My point is that when a family member lives it day in and day out and gets little or no relief even when they ask, it's tough. It's made even worse when we hear the derogatory comments, the pity, or are told what we should do or how to handle the problem, or, if we say we've already done that, are told that that we're resisting help.
4
Henry, I hear you. Life is tough. Bless you.
4
Several commenters mentioned the tendency of older people to resist moving to some kind of alternative arrangement (whether with other family or retirement/nursing facility).
if you are aware of the impending need soon enough, and have other family members to talk to, I would urge you to be patient and take the time to educate your siblings/cousins/relatives.
In 2005, my wife and I were living in South Carolina, and for the first time since we left NY shortly after 9/11, we visited my folks in NJ. Both my brother and sister lived closer, and visited regularly. We were horrified to find the 1956 home my parents had lived in for nearly a half century was filthy, food in the fridge was rotting, and nobody - my parents or siblings - seemed to feel any urgency about it.
As a psychologist, I observed that my then 84 year-old mother was already showing signs of dementia. NOBODY wanted to hear anything about that. Over the next 3 years, I communicated regularly with my father (my mother wouldn't have wanted to hear about this) and my two siblings. I had a talk with them the summer of 2008 when I visited again. There was still much resistance but the years of talking had made a difference.
I talked often with my brother (with whom I was closest) and he and my father were becoming slightly more open. Finally, in June 2009, my mother - who somehow realized the extent of her own dementia (!) announced she was ready to leave.
Patience. It's worth it.
www.remember-to-breathe.org
if you are aware of the impending need soon enough, and have other family members to talk to, I would urge you to be patient and take the time to educate your siblings/cousins/relatives.
In 2005, my wife and I were living in South Carolina, and for the first time since we left NY shortly after 9/11, we visited my folks in NJ. Both my brother and sister lived closer, and visited regularly. We were horrified to find the 1956 home my parents had lived in for nearly a half century was filthy, food in the fridge was rotting, and nobody - my parents or siblings - seemed to feel any urgency about it.
As a psychologist, I observed that my then 84 year-old mother was already showing signs of dementia. NOBODY wanted to hear anything about that. Over the next 3 years, I communicated regularly with my father (my mother wouldn't have wanted to hear about this) and my two siblings. I had a talk with them the summer of 2008 when I visited again. There was still much resistance but the years of talking had made a difference.
I talked often with my brother (with whom I was closest) and he and my father were becoming slightly more open. Finally, in June 2009, my mother - who somehow realized the extent of her own dementia (!) announced she was ready to leave.
Patience. It's worth it.
www.remember-to-breathe.org
20
Proximity is everything. Maybe your 'in-town' siblings -- maybe they were simply tired, drained, overwhelmed and worn out themselves?
18
I agree with jazz one. It's easy to be concerned when you're the adult child who lives far away. So much easier than being involved on a regular basis, as I am, looking after my 92-year-old mother with dementia. I have several non-involved siblings who conveniently live too far away to help.
17
Well, no, it was actually intense resistance. My brother was living with them at the time and had left work to be with them, and was enjoying himself very much. He later acknowledged he didn't want to see his parents as weakened or less than fully capable.
My wife and I went up the next year after my mother had acknowledged it was time to leave (she was 87 at the time, still working full time as a dietician at a state hospital where they couldn't fire her, and finally realized she could no longer do her job), and spent a week talking to my father and 2 siblings and managed to convince them our parents could no longer take care of their home (my brother wasn't going to keep living there full time).
About 5 years later, after several years of telling my siblings that New Jersey was the most expensive state in the country for nursing care, I convinced them to have my parents move down here. My wife and I had already spent 5 years looking after her mother, visiting her once a week, managing her finances, and then having her move in with us for 12 days of hospice care when she passed.
My parents came down in the summer of 2015. My wife and I visited regularly, and I became the mealtime pianist at the nursing home. My father passed in August at 96 - we brought a keyboard to the ICU and played and sang his favorite music.
My brother has since moved here and we are working together as a family to care for my mother and insure each sibling a proper role
It does take patience.
My wife and I went up the next year after my mother had acknowledged it was time to leave (she was 87 at the time, still working full time as a dietician at a state hospital where they couldn't fire her, and finally realized she could no longer do her job), and spent a week talking to my father and 2 siblings and managed to convince them our parents could no longer take care of their home (my brother wasn't going to keep living there full time).
About 5 years later, after several years of telling my siblings that New Jersey was the most expensive state in the country for nursing care, I convinced them to have my parents move down here. My wife and I had already spent 5 years looking after her mother, visiting her once a week, managing her finances, and then having her move in with us for 12 days of hospice care when she passed.
My parents came down in the summer of 2015. My wife and I visited regularly, and I became the mealtime pianist at the nursing home. My father passed in August at 96 - we brought a keyboard to the ICU and played and sang his favorite music.
My brother has since moved here and we are working together as a family to care for my mother and insure each sibling a proper role
It does take patience.
20
Our church has announced a care givers support group through the Council On Aging in our region. This is great news.
13
There are a limited number of social service Respite programs for elderly caregivers out there. I work for one on Long Island, EAC Network, and believe it or not, we are often underutilized. We provide in-home companion visits and currently have companions available in some areas of Nassau.
10
Thank you, Chris! I visited the EAC website, and plan to give a call tomorrow!
2
From my perspective I enjoyed taking care of my Mother for the last ten years of her life -- I never had to go out with people I could not stand. After she died all of these "good-hearted" people all of a sudden wanted to be a part of my life. After making up so many lies as to why I didn't want them around, I finally said just leave me alone, outside of work I do not want your company. But then I am a misanthrope.
21
When my parents lived in a "senior living community" which included independent and assisted living as well as a locked "memory care floor, I was a co-leader of the Family Council (FC) which held meetings and sent updates out to the families and friends of facility residents. Many (FC) members were often children who lived in distant places and needed the FC for facility news. Other members were the caregivers who visited regularly; in the case of the memory care unit, caregivers who spent hours with their family member could have FC friends who understood their burden.
These caregivers were not isolated, but many of them had been prior to their family members becoming residents. They had given up hours of sleep, jobs, leisure activities and peace of mind. They had tried to do physical caregiving which was beyond their strength and felt the emotional burdens of being a caregiver with no respite. Now they were sharing their burdens with hired strangers and had to follow the rules of a regulated facility. Their family members were safer, were taking their medicines more regularly and eating food more suited to their illnesses, but caregivers still felt guilt for "putting Mom or Dad in a "nursing home" which the facility did not provide care as.
In complex families it may be easier to share payments for facilities than give hands-on care-- only available to those with money. The guilt, the worry, the family disputes don't just go away. The isolation does-- at a cost.
These caregivers were not isolated, but many of them had been prior to their family members becoming residents. They had given up hours of sleep, jobs, leisure activities and peace of mind. They had tried to do physical caregiving which was beyond their strength and felt the emotional burdens of being a caregiver with no respite. Now they were sharing their burdens with hired strangers and had to follow the rules of a regulated facility. Their family members were safer, were taking their medicines more regularly and eating food more suited to their illnesses, but caregivers still felt guilt for "putting Mom or Dad in a "nursing home" which the facility did not provide care as.
In complex families it may be easier to share payments for facilities than give hands-on care-- only available to those with money. The guilt, the worry, the family disputes don't just go away. The isolation does-- at a cost.
46
A message from your note: sometimes "institutional"care is not a curse, but a gift of life. The time you spend with your parent ot other - can be done with a focus on how they are feeling, what might make the visit better, taking them out for an afternoon if they're able - instead of all of the exhausting work. And sometimes everlasting resentment and family fractures.
ALL nursing homes have problems which crop up; all require the involvement of someone dedicated to advocating - -but not all are horrible places.
And some of the same issues arise in them that arise in home: #1 is, I think, falls; dealing with behaviors which might threaten other residents' welfare - or their own - without use of restraints or overmedicating.
We should all be advocating for demanding excellence of care in any place of care where residents are dependent on the staff.
ALL nursing homes have problems which crop up; all require the involvement of someone dedicated to advocating - -but not all are horrible places.
And some of the same issues arise in them that arise in home: #1 is, I think, falls; dealing with behaviors which might threaten other residents' welfare - or their own - without use of restraints or overmedicating.
We should all be advocating for demanding excellence of care in any place of care where residents are dependent on the staff.
12
I empathize with Ms. Briarton; she is too old for surgery to remove stenotic vertebrae, a 16-hour operation if done C7 to S1. I recently underwent it and have a three-year recovery, including adjustments to the occipital cortex and optical memory since the complete operation adds height. But I also have myoclonus, one of the most complex neurological disease. A disease in itself, it also covers Parkinson's, epilepsy, Alzheimer's, dementia, et al., plus combinations of myoclonus with any of those diseases. I have glioses in my spinal cord which is twisted into a trapezoid affecting trunk nerves.I fall even with a walker; am always battling atrophy. Since my vertebrae are now titanium, I cannot bend, shower, dress. I've been paralyzed three times so have residual paralysis and cannot open jars, prepare my box of pills. My skin is numb so I know of a deep cut only when someone tells me that I am bleeding. And I am diabetic. So my problem is just going outside, which I do every four months to visit specialists so that I can get renewals on drugs, two of which work, the rest don't (e.g., Celebrex for arthritis). Worse, NYS passed an opiate registry three years ago so I can only get THC at the NYS marijuana clinics. The THC is overpriced and ineffected. In lieu of opiates, pain doctors push RF and nerve blocks (for which they make more money as surgery vs. writing a prescription). But my nervous systems is inverted so the two procedures have an opposite effect.
7
Cared for my aging father for 10 years at his home and the burden of caring for him was mine alone, no help or visits from anyone. After several falling episodes and ER trips, it became apparent he needed 24/7 supervision. All went well for nearly 2 yrs in a local AL facility near me until he was assaulted by a new resident, after which I removed him for safety reasons. Chose a second facility, highly rated, but after a couple of months, he fell in his room and suffered hip fractures requiring surgery. he's now confined to a wheelchair in a nursing care facility where he currently resides at great expense, suffers from Dementia and can't remember anything. He's spent down his life-savings at this point and I'm out of options, except to apply for Medicaid on his behalf, and/or put his home up for sale, neither of which I'm comfortable in pursuing. It's become a lonely path, worrisome and too burdensome for one person to handle.
56
Sell the house. He won't know.
24
...or talk to a lawyer who specializes in Medicaid. Depending on your state, he may be able to keep the house. But there are many variables, so legal advice is needed. Yes, so much of caring for a loved one with dementia is having to step--or leap-- over boundaries. But you have to do what you have to do, so just do that next necessary thing. Keep going and don't look back. (Kind of a conflation of the wisdom of Winston Churchill and Satchel Paige.) As you can see from this wonderful article and comments, there are many of us out there going through the same thing. So maybe we're not quite as cosmically lonely as we sometimes feel day to day. Good luck!
26
Rusty...I met with an Elder Law Attorney; their fee to protect some of Dad's assets and handle the Medicaid Application process was $12,000, no funds left to support that cost. If Dad passes away during this process (aged 98 this year), none of the attorney's fees are recoverable. Their advice was to put his house up for sale ASAP and pre-plan his funeral. Realizing he can never go home again, I've done that, tired of worrying how to continue paying his bills such as property taxes, homeowner's insurance, lawn maintenance, paying for plumbing/electrical wiring issues that popped up, and repairs that he didn't address while he lived there. Growing up in the Depression Era, he opted to jerry-rig everything and fix things his way, causing lots of headaches and extra out-of-pocket expense for me. I'd like to be able to look back at some point with no regrets.
13
As the aging population increases, there needs to be more government supported programs, period. Spouses and children should not have to give up their lives to care for their loved ones.
36
MSS - Because those "spouses and children" are overwhelmingly wives and daughters, you can bet that no government-supported programs will be forthcoming.
15
My mother died at the age of 97 tears and 5 months. Mostly, there were just the two of us. Everybody was so busy with their lives. I think, they also expected that since my mother and I were living together, everything was fine. I just wished others had thought of her and visited.
69
This is what home health aides are for - and what Medicare ought to pay for. Even a few hours a week can make a world of difference. Isolation isn't good for anyone - not the carer or the caree.
46
I have an autistic wife and child, 31 and 11, and I can totally relate to this. Caregivers like me are even more under the radar because people tend to think of caregivers as older people who take care of seniors. Sometimes I feel like I don't even exist.
64
And I can totally relate to you, Nelson. As the single parent of an autistic adult son whose father died many years ago, I am lucky to have a few friends who care about the two of us, even as they go about living their own lives. One of them in particular helped us out tremendously when I was ill a while back. She is a good friend and sees us when she can. I am grateful, but the daily struggles and challenges are my own. I'm trying so hard to do something for myself so I don't totally lose my own personhood. Best to you.
18
Ms Anonymous,
Our situations sound very familiar. I have an autistic/developmentally delayed son who is now 29. His father died when he was 4. It has been just the two of us since 1992.
I am also afraid of losing my own personhood. We are going to be moving to a new town this month and I am hoping to find some connections there. It is so difficult.
Our situations sound very familiar. I have an autistic/developmentally delayed son who is now 29. His father died when he was 4. It has been just the two of us since 1992.
I am also afraid of losing my own personhood. We are going to be moving to a new town this month and I am hoping to find some connections there. It is so difficult.
27
I have been a "caregiver" since 1982 when my son was born. He is multiply handicapped. I would have some sympathy for individuals caring for their elderly parents if they had been kinder to and more inclusive of families like mine. Instead, I think they should count their lucky stars that theirs is a time limited role, and suck it up. For those who "feel uncomfortable" in the presence of disability, shame on you.
12
At the height of the financial/housing meltdown, multi-generation housing has become fashionable out of necessity. Perhaps it is something to explore. Extended family living in cluster is not unusual for certain ethnic immigrant. An import worths considering as the boomer generation considers to age. Retirement communities are growing, this is an extension of it.
9
I think this makes so much sense, and that local towns, etc, need to reconsider some of their zoning to allow for homes or residences 0 such as condos, etc, which are wimed for multi generations.Or families made of friends, not related by blood or marriage. CO-housing does some of this.
13
I appreciate the thoughtful and empathetic comments as well as the useful suggestions, but I believe this issue is part of a larger problem. When we avoid spending time with the disabled, those with dementia or those terminally ill, we can deny our own vulnerability. We can forget that we are all only temporarily able-bodied and/or temporarily young, and that the role of caretaker may be in our own futures. It is our fears that keep us from recognizing what the caretakers already know, that no matter how lost or estranged, people need to be respected, cared for and loved.
166
Beautiful, wise comment.
19
Thank the good lord for social changes. When I took care of two successive family members til the days they passed, there was no thought of any kind of support for me. I was glad to do it, grateful even - but in exchange for the privilege I lost a decade of my work life, my chances to have my own family and most of my economic position. It's good to see that this has changed, if not completely at least to a significant degree. I salute all those who have propelled the changes in societal expectations and wish nothing but the best for those involved.
35
Nothing much has really changed, sorry to say
The Village Movement is the type of organization that RNB is describing. there are hundreds of "villages"-- organizations of volunteers around the nation, who are vetted and trained to provide the kind of friendly visits caregivers need, among other services for seniors both in -home and in the community. Hundreds more villages are in development, since the needs are only going to increase as the Age of Baby Boomers retires and ultimately declines.
16
It seems to me that there is a need for an organized force of volunteers who have sufficient training to feel comfortable visiting with dementia patients and their caregivers. Training could deal with the problem of not knowing what to do or say. Possibly also sufficient caregiving skills to provide respite care for a few hours at a time, when people cannot be left on their own. Something like hospice volunteers but not limited to those at death's door. It would likely take grant funding to develop training programs and hire coordinators to conduct training, vet new volunteers, match volunteers with those needing visits, and manage schedules, but the impacts could be huge, and it would provide a way for people to get involved in the community and possibly even build friendships.
9
Why volunteers? Who will these saints be? No doubt women (in your head). Health care aides are grossly underpaid for the hours which they work. Perhaps we should figure out a way to make that type of job more attractive and better paid.
21
An excellent point.
Especially since robots will be replacing human beings in many jobs in the fast-approaching future, these types of jobs, which can really only be performed by real people, should be an asset to the patients, families/caregivers, workers, and the economy.
We must work to develop a more compassionate, humane health care system.
Especially since robots will be replacing human beings in many jobs in the fast-approaching future, these types of jobs, which can really only be performed by real people, should be an asset to the patients, families/caregivers, workers, and the economy.
We must work to develop a more compassionate, humane health care system.
3
Exactly my thought as well. I will volunteer to take care of sick people when the government lowers my taxes and arranges for unpaid volunteers to run the government.
3
My mom had a very bad stroke 3 years ago. She can't feel her right side and has severe tremors on her left side. She needs help with feeding, bathing, getting in and out of bed, and using the bathroom. Her husband wasn't able to take care of her, so my brother and I (we were living together and going to school) brought her to live with us. At the time he was 28 and I was 20. For the first year we took care of her together, then my brother left (he found a job in another state) and it was my mom and me.
I was able to leave her alone when I went to class, but I had to come right back home afterwards. The first couple of months went okay, but then I began to slip into a depression, my grades suffered and so did I. None of my friends came to visit because they didn't have time (I suspect my mom's drooling and inability to speak clearly made them uncomfortable), my brother was far, and my sister was always busy. I couldn't make any friends because no one understood that I really couldn't be out of the house for too long, and they thought I was just making excuses because I didn't want to hang out or study.
After a year I told my brother I couldn't do it alone any longer. He found a job closer to us, and now we are together again. Even though I'm still home most of the time because my schedule is more flexible (as a student), and I'm still responsible for most of the care my mother needs, it makes all the difference in the world to have his emotional support.
I was able to leave her alone when I went to class, but I had to come right back home afterwards. The first couple of months went okay, but then I began to slip into a depression, my grades suffered and so did I. None of my friends came to visit because they didn't have time (I suspect my mom's drooling and inability to speak clearly made them uncomfortable), my brother was far, and my sister was always busy. I couldn't make any friends because no one understood that I really couldn't be out of the house for too long, and they thought I was just making excuses because I didn't want to hang out or study.
After a year I told my brother I couldn't do it alone any longer. He found a job closer to us, and now we are together again. Even though I'm still home most of the time because my schedule is more flexible (as a student), and I'm still responsible for most of the care my mother needs, it makes all the difference in the world to have his emotional support.
80
My heart breaks for you. I cared for my mother when she was 85-90 and I was in my 50s -- I retired early, had a career behind me, money in the bank and established friends. It was still incredibly difficult and at times, painful. To imagine you doing this in your early 20's -- welll, it's not imaginable. I'm hoping for the best for you.
53
I am sorry to hear all you have on your plate and admire your fortitude. I am 60, married and gave up our life as we knew it to take care of my parents. Mom passed away last year. Dad was doing so well but suffered a stroke last month and now I am a caregiver again. It is exhausting even with hired help. And isolating because it is all encompassing even when they are doing better and somewhat independent. I work from home; exercise but still feel like I have no friends and nothing to talk about outside of Dad's health. I will pray for you, your brother and Mom.
29
this article was spot on! I've been a caregiver for a number of years, trying to take some of the burdens off of families and offer respite. I know where you are coming from.... and yet, reading this article about your personal experience has taught me a lot. thank you for sharing.
12
This country must do much, much more in helping us care for family members. We also need to legalize euthanasia for those who want it, so that once quality of life has gone out the window, we can be in control.
Also, while there are exceptions, men as a whole die at a younger age than woman. This story here included a woman that married a man 17 years her senior, and now she is spending her time caring for her husband with alzheimer's. More women should be marrying men closer to their own age, if not younger. Otherwise, it will continue to be primarily women who spend their own 'golden years' caring for their husbands until their deaths, and then spending subsequent years, alone. Of course, one spouse will always need to care for the other spouse, but to me this is just another result of sexism, whereby it's typically the women who are doing all the work in this vein. If more women stopped buying into this notion that the man 'should' be older than her, or that it's 'normal' for women to marry a man 10-20 years their senior, we'd no longer hear so many stories of primarily the older women having to be 'nurses', and outliving their (same age or older) husbands.
If the tables were turned and it were primarily the older men who were having to care for their wives, I have to wonder if our government or society would address this care-giving issue with more urgency.
Also, while there are exceptions, men as a whole die at a younger age than woman. This story here included a woman that married a man 17 years her senior, and now she is spending her time caring for her husband with alzheimer's. More women should be marrying men closer to their own age, if not younger. Otherwise, it will continue to be primarily women who spend their own 'golden years' caring for their husbands until their deaths, and then spending subsequent years, alone. Of course, one spouse will always need to care for the other spouse, but to me this is just another result of sexism, whereby it's typically the women who are doing all the work in this vein. If more women stopped buying into this notion that the man 'should' be older than her, or that it's 'normal' for women to marry a man 10-20 years their senior, we'd no longer hear so many stories of primarily the older women having to be 'nurses', and outliving their (same age or older) husbands.
If the tables were turned and it were primarily the older men who were having to care for their wives, I have to wonder if our government or society would address this care-giving issue with more urgency.
26
Very good points. Statistically speaking though, most women marry men that are close to them in age - age gap relationships are not the majority. However, I do believe that women who marry much older men increase their odds of becoming caregivers (in fact, the act of marriage alone increases your odds of caregiving, even with a same age spouse!)
It is strange though. My sister married a man her age, and he was riddled with health problems for so much of their marriage. She eventually divorced him after 29 years for various reasons - one being he absolutely refused to engage in healthy behaviors.
My own spouse is 11 years senior in age to me (age 70) and is very healthy - and his own mother is alive and physically intact at age 91, and lives alone. His entire family seems to be exempt from cardiovascular disease, diabetes and other maladies. Unless they drank or smoked, all his relatives live well into their late 80's, 90's, and his maternal grandmother lived to 103. My own family history contains early deaths from cardiovascular disease, with my own father passing at age 54, and my mother passing at age 77. I know statistically I will experience widowhood (I can only hope for no long illness to precede that event), but taking into account family history - I might be the one to experience illness or early death.
Good comments!
It is strange though. My sister married a man her age, and he was riddled with health problems for so much of their marriage. She eventually divorced him after 29 years for various reasons - one being he absolutely refused to engage in healthy behaviors.
My own spouse is 11 years senior in age to me (age 70) and is very healthy - and his own mother is alive and physically intact at age 91, and lives alone. His entire family seems to be exempt from cardiovascular disease, diabetes and other maladies. Unless they drank or smoked, all his relatives live well into their late 80's, 90's, and his maternal grandmother lived to 103. My own family history contains early deaths from cardiovascular disease, with my own father passing at age 54, and my mother passing at age 77. I know statistically I will experience widowhood (I can only hope for no long illness to precede that event), but taking into account family history - I might be the one to experience illness or early death.
Good comments!
1
We now live in a continuing care retirement community. Many here are care givers to spouses and are under lots of pressure. Most institutional attention goes to the patient and far too little to the spouse and their needs. Then there are those in independent living who are burdened with great loss of either their own functioning and/or the loss of a spouse after a long seige, sometimes several years. All of these need attention and it is more than is or can be supplied by professionals and aids; neighbors who are able can also get burned out if the needs are great.
If many of these needs are to be met, it will be because thoughtful people build citizen volunteer groups and as individuals reach out and touch others in need. Alcoholic Anonymous did this and started a magnificent movement which has no rival in its buddy system, its volunteers who save the lives of others. We need something similar for those many caregivers, those lonely and despairing ones left on their own to suffer and/or grieve.
If many of these needs are to be met, it will be because thoughtful people build citizen volunteer groups and as individuals reach out and touch others in need. Alcoholic Anonymous did this and started a magnificent movement which has no rival in its buddy system, its volunteers who save the lives of others. We need something similar for those many caregivers, those lonely and despairing ones left on their own to suffer and/or grieve.
15
As my friend, former Wisconsin Gov. Marty Schreiber (book My Two Elaines: Learning, Coping, and Surviving with Alzheimer's) says, "Alzheimer's isn't a chicken casserole disease." When a loved one dies, friends check in and bring chicken casseroles to express sympathies. Caregivers, especially for those who care for loved ones with Alzheimer's, too often become invisible to their friends because caregiving responsibilities span years. Friends disappear because they don't know what to say or how to act.
With education, we hope that people on the outside of a caregiving home realize that caregivers need their support and company more than ever. Remind them that what they are doing is appreciated and selfless ... that they are still in your hearts and minds, and that they're still part of the living.
With education, we hope that people on the outside of a caregiving home realize that caregivers need their support and company more than ever. Remind them that what they are doing is appreciated and selfless ... that they are still in your hearts and minds, and that they're still part of the living.
22
I always find the comments from people who do not anyone to help them when they become are sick. I don't think one has to encourage family not to help or come around. Usually that happens with out a word. It is also unrealistic if you are in your sixties to think you have 20-30 years to plan out your future. Just read the obituary pages.
My husband died from Frontotemporal Degeneration. I was basically his sole caregiver until he died except for a few hours of home care and hospice at the end. Though he had been a drug and alcohol counselor and helped many in the community and worked in some very challenging environments no one came around to see him and the phone never rang.
We need one another. Yes, we are all alone but that is why friendship, family, and social interaction is so needed. I have met people with all the so called right politics who are worried about people thousands of miles away and yet do not visit a sick friend or family member.
And if you are sick and lonely no amount of money can solve that but a visit from a friend or family member will help both the ill person and the caregiver.
My husband died from Frontotemporal Degeneration. I was basically his sole caregiver until he died except for a few hours of home care and hospice at the end. Though he had been a drug and alcohol counselor and helped many in the community and worked in some very challenging environments no one came around to see him and the phone never rang.
We need one another. Yes, we are all alone but that is why friendship, family, and social interaction is so needed. I have met people with all the so called right politics who are worried about people thousands of miles away and yet do not visit a sick friend or family member.
And if you are sick and lonely no amount of money can solve that but a visit from a friend or family member will help both the ill person and the caregiver.
34
Hi Maureen, One of my brothers had Parkinson's with dementia (died in July) and another has FTD. Our mother had ALZ, and I was her caregiver for the last 6 months of life (she lived in a care facility, though, which made it easier for me and my then-young family). I visit my sisters-in-law (and brothers) several times a year, and call weekly. I know how debilitating watching a loved one decline week by week, and I applaud you being able to care for your husband through FTD.
I honestly cannot understand how family members can abandon the caregivers or the people for whom they are providing care. Do I want to see my brothers in their sadly constrained states? Of course not, but it is the right thing to do, and providing comfort, succor and love to their caregivers is the ONLY responsible action I can take and I do it gladly.
I honestly cannot understand how family members can abandon the caregivers or the people for whom they are providing care. Do I want to see my brothers in their sadly constrained states? Of course not, but it is the right thing to do, and providing comfort, succor and love to their caregivers is the ONLY responsible action I can take and I do it gladly.
13
Sometimes the people with "all the right politics" and social justice concerns are the first ones to vanish when their friends need them.
10
Caregiving is a job. An emotional, physically and financially challenging job. It has its blessings, its joy. I was a caregiver for both my parents. I loved being able to care for them, especially at the end when they transitioned from this life. But, I was a long distance caregiver and my parents had the money and the foresight to have LTC insurance. They could pay out-of-pocket for the hands-on care they needed every day. Even so, my siblings and I felt the drain of constant worry, of phone calls in the middle of the night letting us know they fell, of worrying that they only had enough money to fund another 3 years of in-home care - and then they would have to go on Medicaid.
Something that helped me manage it all was the Caregiver Notebook. You can download it at http://www.springwell.com/resource/caregiver-notebook
Something that helped me manage it all was the Caregiver Notebook. You can download it at http://www.springwell.com/resource/caregiver-notebook
7
Some years ago, while caring for both my parents, I was contacted by a large hospital/university for participation in a caregiver study--a rewarding experience, as I overcame reticence in talking about myself.
Often overlooking or denying my own need for respite, it was revealed while retrieving a birthday card from the mailbox sent by the researchers. Unable to control crying, I stumbled back to the house a grateful wreck.
Often overlooking or denying my own need for respite, it was revealed while retrieving a birthday card from the mailbox sent by the researchers. Unable to control crying, I stumbled back to the house a grateful wreck.
37
If you are a spousal caregiver, please visit the Well Spouse Assn. at www.wellspouse.org, the only national/int'l peer-to-peer support organization for those caring for chronically ill or disabled spouses/partners. It is a wonderful source of friendship and understanding with many resources to connect with other spousal caregivers.
10
I cared for my mother for over 6 years. In the beginning she was ok, and we could go out and do things, She suffered from Congestive Heart Failure due to rheumatic heart and needed oxygen. But as the years progressed, she went from being able drive and be more independent to becoming dependent on me. I am grateful to the friends and my nieces who came and visited and made my life and her quality of life better. Even the idea of someone coming over for lunch could make her day. Her cognitive functions were good to the end, but she still liked to keep me nearby. She passed away 18 months ago, and I have to say my anger and hurt at siblings and in-laws is still raw. People said, 'oh, it's too much for them" as if that was an acceptable excuse for barely visiting and not helping. They refused to see the situation because they were uncomfortable, as if I was thrilled over the last year to have to pick her up off the floor when she fell, manage a myriad of doctors and help her get washed and dressed. I was lucky, my mother was cheerful, forgiving and positive to the end. But the isolation and loneliness took it's toll on my health and well being. This was the time I realized who my friends were and who I could count on. Breaks are great, but the stress in managing the team to come in and the calls really barely made it a break. Now, 18 months later I am getting my life back yet, everyday I miss my mother and wish I had her back for at least one more day.
73
I am the sole caretaker of stepdad with Lewy Body dementia, endocarditis, heart failure & on coumadin (also alcoholic with me as the mean daughter restricting his intake) as well as Parkinson's disease. Doctors are aware of alcohol intake. My mom has diabetes and is going blind as well as losing balance filing several times. She refuses to get out of her chair, rarely will do her exercises and fights me on her diabetic restrictions. I rarely see my NINE siblings. Two of them take turns bringing my mom to the doctor while I stay home w/dad. So credit is due. Both seem to be on a perpetual vacation this summer .
My big problem: My mother is desperately protecting her considerable estate for her children to inherit. For some reason this has always been very important to her. In the meantime, I am overwhelmed & depressed. In-home respite care is minimum $20 per hour.
I can't seem to set or maintain healthy boundaries. I'm in recovery, and this environment is so unhealthy for my sobriety. Within the last several months I've developed this habit of picking at the skin on my thigh where I have created bad scars. I don't even realize I'm doing it. Taking care of two elderly unhealthy seniors (both fall risks) is way too much for one person 24/7. What's wrong with me that I can't demand the help that I clearly need? Well, I guess it'll be okay so long as everyone gets their money in the end. I'll use my inheritance for a nice casket.
My big problem: My mother is desperately protecting her considerable estate for her children to inherit. For some reason this has always been very important to her. In the meantime, I am overwhelmed & depressed. In-home respite care is minimum $20 per hour.
I can't seem to set or maintain healthy boundaries. I'm in recovery, and this environment is so unhealthy for my sobriety. Within the last several months I've developed this habit of picking at the skin on my thigh where I have created bad scars. I don't even realize I'm doing it. Taking care of two elderly unhealthy seniors (both fall risks) is way too much for one person 24/7. What's wrong with me that I can't demand the help that I clearly need? Well, I guess it'll be okay so long as everyone gets their money in the end. I'll use my inheritance for a nice casket.
1
I am caregiver to my 80 year old mom and 96 year old father in law, both of whom live in our home. They both moved in within six months of each other, 3 years ago, right when we were in the middle of an interstate move. So, not only did I gain 2 people to care for, I lost my social circle at the same time.
In the last 3years, I haven't socialized with anyone outside of my home. I never have contact with others except in a very superficial way. My entire world has shrunk to this home. Financially ,we are stressed because I they can't be left alone. My hubby is working long hours to pay the bills; neither of these old people have any savings to support themselves. No other family members offer help. We haven't had even a mini vacation in 4 years -not that we can afford one anymore. Hubby makes good money , but paying for 2 extra adults at the same time our younger 2 are still in school is pretty tough.
There are days that I just don't want to get out of bed. Days when I lie awake at night and cry and figure out how it got this way. There are times, honestly that I wish the old ones would hurry up and kick it. Mom doesn't need much care but dad...and dad is one of those angry old white men with a chip on his shoulder, who doesn't respect women .
I love them. I do. But this is supposed to be MY time. My kids are grown. Hubby and I are supposed to finally be free to enjoy each other and our life. Instead, others come first. Being alone makes it so much worse.
In the last 3years, I haven't socialized with anyone outside of my home. I never have contact with others except in a very superficial way. My entire world has shrunk to this home. Financially ,we are stressed because I they can't be left alone. My hubby is working long hours to pay the bills; neither of these old people have any savings to support themselves. No other family members offer help. We haven't had even a mini vacation in 4 years -not that we can afford one anymore. Hubby makes good money , but paying for 2 extra adults at the same time our younger 2 are still in school is pretty tough.
There are days that I just don't want to get out of bed. Days when I lie awake at night and cry and figure out how it got this way. There are times, honestly that I wish the old ones would hurry up and kick it. Mom doesn't need much care but dad...and dad is one of those angry old white men with a chip on his shoulder, who doesn't respect women .
I love them. I do. But this is supposed to be MY time. My kids are grown. Hubby and I are supposed to finally be free to enjoy each other and our life. Instead, others come first. Being alone makes it so much worse.
275
You are not alone. My husband and I care for my mother along with our teenager. I quit my executive job because it was too much, arranging for caregivers in the home, worrying about work and home, always waiting for some ball to drop. We have lost all spontaneity in our life for the last three years as mom can't stay alone for more than a few hours. Taking a vacation is an impossibility, not to mention even a weekend away. We had to give up our own house, suddenly, to move in here and are still trying to get it sold. Long distance family wonders why this has taken us so long - between meal times, laundry, keeping mom company and the inability to be away more than a few hours at a time (along with trying to allow our teenager to have a life as well, attending his ball games, etc.) it's not possible. My siblings visit sporadically (1-2 per year) and have nothing but "advice" despite never having been at-home caregivers. I'm happy to have spent this time with mom, but I'm floundering. No one cares. I get told by others how wonderful I am and how they are "just not made for this kind of work". Although this is valuable time for my child with grandma, I worry about what experiences I have missed (and will continue to) with my only child over these years.
31
I am sorry you are having to carry such a heavy burden. I hope things will get better for you.
13
Kate, you are in a very difficult situation. If your mom and father in law have no resources, may I suggest you speak to an eldercare lawyer and/or a social worker as soon as possible. Such professionals may be able to assist in doing some estate planning and completing the necessary application for Medicaid or some other government program that may help you and your family immensely. Some states have programs where the disabled elderly person can live at home, and the government pays for a home health aide to take care of them. Sometimes this may include having a visiting nurse visit the home occasionally.
Good luck to you and your family.
Good luck to you and your family.
4
The day I lose my cognitive abilities and have to be dependent on someone else for basic functioning is the day I kill my self. I have no desire to be burden on anyone and drag them thru pain.
43
I doubt you will be able to reason through to do that because you will have lost your cognitive ability. I am serious. People make that comment all the time, but folks that plan is not one that is realistic based on my experience with those who have dementia etc.
15
Make sure you put your wishes in writing, at least for "do not rescusitate". I have.
6
Margo you are correct. A living will and health care power of attorney and DNR documents are a must. One must make sure that their healthcare power of attorney understands what your wishes are. There must be multiple conversations on what your wishes are and not some quick 15 minute talk. The power of attorney should read the documents and make sure he/she understands them. The power if attorney needs copies and should scan them into his/her cell phone so that the power of attorney does not have to scramble for them.
9
I don't want to ruin my loved ones life if I need care-taking. Really what is the point in dragging out life to the last breathe. Is that life? I hope more people will consider what will happen to their families when they get old or ill and are unable to take care of themselves.
I remember the stories of Eskimo old people just sleeping outside one night so as to not burden their families. I don't know if that's true but I certainly respect the concept.
If you love your spouse or kids why do you want to ruin their lives? Is that love?
I remember the stories of Eskimo old people just sleeping outside one night so as to not burden their families. I don't know if that's true but I certainly respect the concept.
If you love your spouse or kids why do you want to ruin their lives? Is that love?
42
Guilt-tripping them into suicide sure isn't love. . .
8
As a couple in our 60s, we have discussed this and promised to help each other make our final exit if and when we lose our minds or health & need assistance "getting out" or as I say, moving on to the next thing. This situation will become more common. It's not good to "live too long". For what? To create poor paying jobs for CNAs? And profits for privately owned memory care centers and the like? "Living" with dementia is not what either of us consider living and not what we want to endure.
4
Unfortunately, it can be something that happens suddenly—my mother had a fall and a brain bleed that left her with vascular dementia. Or it can be a car accident. The problem is not the people, the problem is a society that refuses to acknowledge age and disability and is afraid of less-than-perfect people, which is counterproductive because, if we're lucky, we all get to age and may become disabled then or earlier. I wish Americans were less youth obsessed (people of any age can have medical challenges), less self-centered, and more community oriented. The reckoning is coming. It's not just that age is looking every human being in the mirror, but it's how we as a society will treat the most vulnerable among us. So far, we are doing a lousy job. People who have worked hard and paid taxes all their lives shouldn't have the quality of their care dependent on where they live or what they earn.
5
This is a touching and thought provoking article! It illustrates how populations in our western "societies" have been torn apart and atomized. Your problems are entirely yours, and you are guaranteed some kind of "solidarity" from others mainly if you can afford to pay for it (with the exception of some true idealism in the margins).
Our quest for individual "happiness" through money and superficial materialism is pathetic, not least in view of the prospect for the future and for our grandchildren. We are heading towards the cliff, not just unaware like the lemmings, but praising the "prosperity" that drives us there.
Utopia is a real society in which we care for each other, not just for ourselves and our family, but for everybody else. (A true welfare state would be great for a start). Maybe it will be possible to change our egoistic, violent and destructive western culture before it's too late. But the direction right now is not very promising.
Our quest for individual "happiness" through money and superficial materialism is pathetic, not least in view of the prospect for the future and for our grandchildren. We are heading towards the cliff, not just unaware like the lemmings, but praising the "prosperity" that drives us there.
Utopia is a real society in which we care for each other, not just for ourselves and our family, but for everybody else. (A true welfare state would be great for a start). Maybe it will be possible to change our egoistic, violent and destructive western culture before it's too late. But the direction right now is not very promising.
22
finding a group of co-suffering caretakers is key. online groups help--check if inspire has anything for this. altzheimers orgs might. i'd disagree about needing professional supervision, people living with caretakers are pretty expert on the topic and have great tips and sympathy. also when you see a caretaker that seems simpatico--at a home, or at the drs, even on the street, try to bond and share contact info. don't be isolated. but inmportantly, if you can afford it, get them to a home, where others help, and they can have friends. don't keep them and you isolated in your own home. for dementia, small group homes have worked for us. good, not perfect, (overall cheaper than a bigger home that demands private duty nurses). yes olds are parked in barko loungers in front of a tv much of the time, but they can then be watched for wandering etc and helped as needed by a better staff patient ratio. and there are some entertainments. family members still must be involved and are. at my 94 year old aunt and 96 year old mother's places--most of the daughters are there daily augmenting the care--but now we have each other. we are a community where we pay and give attention to everyone's mother. we go out for supper together etc. we sit with the olds and help the conversation flow. we create diversion for the olds and ourselves. it has made all the difference. also there are homes where when you spend all your money, they have to keep you anyway on medicaid I'd guess.
11
Difficult decisions/times lay ahead of my wife and me. I truly hope and pray we are able to take care of ourselves and not be a burden on our children.
7
I wonder if there is a housing type for this situation where caregivers with their dependent could live in a group home type setting where they all share common spaces such as kitchen living room and dining room. They would have people to talk to, provide supervising coverage for those errands, they could chip in for housekeeping and cooking services. It sounds appealing to me if I were in that situation.
64
Another really good idea.
5
For one thing, "youngsters" prepare and take out long term care insurance.
One must have aides eventually as the well spouse also needs a life...or he/she cannot care properly for their loved one..in my case, it all happened suddenly..I was the care giver, recreational therapist, nurse, dietician, friend, wife, until one day I ended up in ICU on an inhalator,
staying in the hospital for three weeks and when I could be released, I could not even stand for having been in bed for three weeks..so off I went to rehab for another 3 weeks returning home with a walker. Our 4 children did the right thing as I would have continued being the caregiver..
They found a superb assisted living facility for people with dementia and that was more than 3 years ago...my husband is so content and involved..none of this sitting in front of a tv all day..and I the spouse have a life as well...it is very expensive and we do not have insurance however we can afford it with some difficulty, but we do..and in our particular case, my husband has declined however minimally and still has great quality of life.
So listen from one who has been there and done that.
One must have aides eventually as the well spouse also needs a life...or he/she cannot care properly for their loved one..in my case, it all happened suddenly..I was the care giver, recreational therapist, nurse, dietician, friend, wife, until one day I ended up in ICU on an inhalator,
staying in the hospital for three weeks and when I could be released, I could not even stand for having been in bed for three weeks..so off I went to rehab for another 3 weeks returning home with a walker. Our 4 children did the right thing as I would have continued being the caregiver..
They found a superb assisted living facility for people with dementia and that was more than 3 years ago...my husband is so content and involved..none of this sitting in front of a tv all day..and I the spouse have a life as well...it is very expensive and we do not have insurance however we can afford it with some difficulty, but we do..and in our particular case, my husband has declined however minimally and still has great quality of life.
So listen from one who has been there and done that.
12
As superficial as it may be when used wrong, for me Facebook has bern a lifesaver. While away from my longterm friends for a transitional job, I fell in love and got married for the first time at the age of 60. My new spouse lives with Huntington's Disease and is now close to housebound. Therefore, despite assistance with tasks and care, I stay home. Mostly. Through FB my friends have followed me here, send support, even help me cheer for our favorite baseball teams night after night. Now I have to relearn old ways of being friends, but for an instant pick-me-up, FB is it. My third place, thanks to my friends.
12
Wow I never would have thought about Facebook in that way. What another great idea.
4
I too found great comfort with Facebook. Everything in this article is so true. My husband had a stroke at the age of 44. We had many friends and he came from a very large family with many siblings. (12) After his stroke friends disappeared and his once close siblings did too. I struggled for many years. When he died 4 years later it was my facebook friends, most of them were people I grew up with, who came to my aid and helped me pay for his funeral expense. People I had not seen since 8th grade began donating money not a dime was received from any of his family. Many people believe that once you are sick so is your mind. This is not always the case. Thank God for Facebook. I didn't feel as isolated as I really was.
12
It's difficult to comprehend how only one person can care for another with such staggering needs. My mother-in-law's 50 year old son lives with her and is there just so that there is someone in the house at times, but the rest of the family, an army of at least 12 people, plus several paid health care workers, are needed to care for her...and she doesn't even have Altzheimer's, just a mild cognitive deficit. Everyone lives at a distance so when it's their turn to be with her, it means time off from work, hours of travel, and a loss of an entire weekend of chores and time with their own families. Just scheduling everyone to visit consumes hours of back and forth messages. Not one person regrets it, but it's mind blowing how many people it takes to care for even a mildly impaired older person. I can't imagine being the only person available to do that, without any other help.
68
As one who has had caregiving experience, I know that being a caregiver is a life draining job. When my husband and I were put in the position of caregivers for my mother in law, I was shocked that people who I had considered close family abandoned us at our darkest hour. During such times, you really learn who is and who is not really family. They reappeared after Mom died, seeking as much money as possible, of course.
Everyone needs a couple of days off here and there. If a sick or elderly person needs lots of time and attention, it takes a team of people to care for him or her. It is not a job for just one or two people.
The heavy lifting, the stress, the lack of freedom, the lack of sleep, etc. is burdensome. Caregiving interferes with your social life, your career, and your life. But you do it because you love someone, and you treasure every moment with them, good and bad. When they are gone, they are gone forever.
Everyone needs a couple of days off here and there. If a sick or elderly person needs lots of time and attention, it takes a team of people to care for him or her. It is not a job for just one or two people.
The heavy lifting, the stress, the lack of freedom, the lack of sleep, etc. is burdensome. Caregiving interferes with your social life, your career, and your life. But you do it because you love someone, and you treasure every moment with them, good and bad. When they are gone, they are gone forever.
106
It is shocking to discover how ready other family members are to "let you take care of it" and then to make clear they expect equal treatment in the will. We are caring for my husband's mother, and I wouldn't do otherwise--but I urge others to insist, ahead of time, that caregiving be recognized in the will. I haven't had a vacation in seven years, and I read online about my husband's sibling's wonderful vacations. Sometimes, they deign to grace our home for a visit, during which they expect us to entertain and feed them 24/7. It would be wonderful to hear, "We are coming for a week so that you can get away, together, for that time!"
1
My Dad is my Mom's primary caregiver for now. She has (I suspect) early onset Alzheimer's with mild cognitive deficits. I live a short drive away and see them frequently; it's always good to visit and let Dad have some peace for a little while. At the same time, I'm the only child available to help them, now or later. I never wanted children of my own, and often feel grateful for that now—I'll remain available to help, whenever possible. I'm scared for all of us.
63
Yeah, as loving families without enough wealth (quite a bit) to afford to pay for private companionship in addition to what other expenses may be even with medicaid, know that even the fancy nursing homes and most of the expensive assisted living places don't really have measured interaction/companion hand holding type services. At the end of the day how much time the patient/resident got to interact with another is not even a category. So many family members do stress and strain over helping in this way. The wealthy pay thousands more for this precious social opportunity but when someone is severely compromised even they have to resort to individualized private 1:1 care.. A modest amount though need not be so pricey we just don't have it distinct as a need and measure care marker
6
Individualized care as you describe is what they call "home health aides". These are NOT nurses at all, not even LPNs, but non-professionals with at most a community college certificate for a 6 month course. They do things like change adult diapers, make light meals, dress or bathe patients -- but mostly, are just there for companionship.
The cost for this in my modest, Midwestern area is $21-$24 an hour -- paid to an agency, which does the hiring, training, background checks etc
Now -- do the math on this. It is about $500 a day or more -- or $3500 a week -- or $15,000 a month -- or $180,000 a year.
Who has this kind of money? And remember, that's just the aide -- the patient still needs rent, utilities, food, doctors bills, etc.
It is $180,000 a year ON TOP of all those other costs. In short, people try this for a short time (unless as rich as Bill Gates) and then quickly figure out that either a family member does it for "free" (giving up an semblance of a decent normal life) OR the patient goes into Assisted Living ASAP.
If that is not bad enough...when I hired home health aides for my ailing aunt, in 2013....from a prominent, well known agency that was licensed, bonded and insured....within 48 hours, the aides had stolen my aunt's cash, credit cards, uncashed checks, all her jewelry including her wedding rings and her fur coat. We only found out because the credit card company, thank god, called us. Most of it was never recovered. The agency did nothing to help.
The cost for this in my modest, Midwestern area is $21-$24 an hour -- paid to an agency, which does the hiring, training, background checks etc
Now -- do the math on this. It is about $500 a day or more -- or $3500 a week -- or $15,000 a month -- or $180,000 a year.
Who has this kind of money? And remember, that's just the aide -- the patient still needs rent, utilities, food, doctors bills, etc.
It is $180,000 a year ON TOP of all those other costs. In short, people try this for a short time (unless as rich as Bill Gates) and then quickly figure out that either a family member does it for "free" (giving up an semblance of a decent normal life) OR the patient goes into Assisted Living ASAP.
If that is not bad enough...when I hired home health aides for my ailing aunt, in 2013....from a prominent, well known agency that was licensed, bonded and insured....within 48 hours, the aides had stolen my aunt's cash, credit cards, uncashed checks, all her jewelry including her wedding rings and her fur coat. We only found out because the credit card company, thank god, called us. Most of it was never recovered. The agency did nothing to help.
5
I hope this does not sound cold. My wife and I are in our 60's with four children in their 30's. Although we don't expect to need assisted living services for another 20 to 30 years, we are preparing now for making the transition to assisted living on our own without burdening our children to do that for us. Our children know we do not expect them to take care of us down the road. Many times elderly people insist on staying in their own homes beyond the point that they can care for themselves or their homes, and resist moving to places that provide assisted senior living. In some cases, children with careers and families of their own are "expected" to disrupt their own lives, sometimes jeopardizing their own family relationships and retirements. Realistically, 20 years is not too soon to start planning for the inevitable declines that occur with aging.
174
I couldn't agree more.
6
But when it is your only child of 34 that can not yet independently care for herself it makes it very difficult to plan constructively because you have no idea what your situation will be.
13
Seems sad to me that this post got more thumbs up than posts acknowledging both the sacrifices and strains of caregiving, but also love for the "invalid".
1
We gave up our freedom at a young age to care for my brother who was totally dependant on others for care. Per my fathers request he was never placed in a nursing home . I would say for both myself and him it was a horrible mistake , we did the best we could with him . He needed more care and help then what we were training to do as young kids . Hopefully I will beforgiven for doing the best I could at in my early 20's. No one cared , no one offered to help , its very isolating for all involved . I would never place that burden of care for a family member on my children .
108
Metoyou--consider yourself forgiven. I have walked many miles in your shoes. My mother had MS. All 4 of us kids were responsible for her care, housework, and meal preparation. We did our best, but we were *kids*, for Pete's sake. Our home environment was sad as all get-out, and my mother was quite verbally abusive. Our father expected adult-level maturity and forbearance from us, but when he had to do more for Mom's personal care, he didn't hold himself to the standards he had for us kids. It was awful. Aside from a few saintly neighbors and our pastor, no one helped. I did have great friends who recognized how difficult things were for me, and that was a big help emotionally. 3 of us kids fled as soon as we could. I never had children, in great part because I had given up my freedom from childhood to my early 20s. I have long-term care insurance because even if I had children, there is NO WAY I would hold them hostage to take care of me. If anyone has the nerve to criticize Metoyou or me, I say that you most likely don't know how hard it is to have that kind of responsibility placed on your shoulders at way too young an age.
37
I don't like nursing homes. I don't want to be in one.
But I'd NEVER EVER obligate my adult children to ruin THEIR lives to keep ME out of a nursing home.
That is not fair to THEM.
Some of the people posting here seem to have a "martyr" complex, where they know this is destroying their own lives -- but feel compelled to do it anyways. One woman did it for her AUNT, even though the aunt had an adult daughter of her own!
Nursing homes exist for a reason, and this is the reason. If your parent is not too bad off -- has mild dementia, can still toilet themselves -- they can go to Assisted Living, which is half the cost of full nursing care.
Destroying your own life is madness.
I have a friend, who promised her mother that "she'd never put mom in a home!" She felt morally bound by that promise. Mom and daughter shared a duplex, with mom living downstairs. Worked out great for years, then mom got dementia....literally the worst case I've ever seen. She was completely out of her wits, incontinent and VIOLENT. She attacked caregivers. She attacked her daughter and daughter's spouse. She threw feces and urine at people. She had to be tied to her bed. It took the daughter, spouse and two shifts of care givers to take care of mom.
And she lived like this for TEN YEARS, finally passing at the age of 96.
In the meantime, the daughter and spouse are completely broken down -- physically AND emotionally. They aged 20 years in 10 years. Their own retirement is ruined. Was this right?
But I'd NEVER EVER obligate my adult children to ruin THEIR lives to keep ME out of a nursing home.
That is not fair to THEM.
Some of the people posting here seem to have a "martyr" complex, where they know this is destroying their own lives -- but feel compelled to do it anyways. One woman did it for her AUNT, even though the aunt had an adult daughter of her own!
Nursing homes exist for a reason, and this is the reason. If your parent is not too bad off -- has mild dementia, can still toilet themselves -- they can go to Assisted Living, which is half the cost of full nursing care.
Destroying your own life is madness.
I have a friend, who promised her mother that "she'd never put mom in a home!" She felt morally bound by that promise. Mom and daughter shared a duplex, with mom living downstairs. Worked out great for years, then mom got dementia....literally the worst case I've ever seen. She was completely out of her wits, incontinent and VIOLENT. She attacked caregivers. She attacked her daughter and daughter's spouse. She threw feces and urine at people. She had to be tied to her bed. It took the daughter, spouse and two shifts of care givers to take care of mom.
And she lived like this for TEN YEARS, finally passing at the age of 96.
In the meantime, the daughter and spouse are completely broken down -- physically AND emotionally. They aged 20 years in 10 years. Their own retirement is ruined. Was this right?
15
Great article. The isolation and alienation are tough and the hardest part of managing my dad for the last 9 years. Although he's now in assisted living, most of my friends (I'm 64) are enjoying their Golden Years, traveling, hanging with grandkids, going to lunch, making their gardens perfect. I'm spending time in the facility most days, keeping my dad company, helping him with exercises, dropping off medications, and at home, uh-huh, wrangling with insurance companies, phone companies, banks. With the exception of one nephew, the rest of my family is not involved. (I think a lot of the disappearing act is that people are frightened by the prospect of all this happening to them one day, and they don't want to think about it. I get it: I don't like thinking about it, either.) Here's another suggestion directed at healthcare providers: could you at least acknowledge my existence in the Emergency Room? Say hello? Introduce yourself? Listen? I am typically treated worse than the hard plastic chair that gets carefully moved around the cramped exam room. You know, the one that I get to sit in for 10 hours while my dad has blankets tucked around him so that he can sleep more comfortably while they figure out the next thing wrong with him. Training the awesome nurses, doctors and technicians that provide my dad such good care to murmur an "attagirl" to that wan-looking woman standing in the corner could go a long way to reduce the loneliness of invisibility.
281
You make a good point about the ER staff. This is just a thought. They are supposed to always introduce themselves, but in circumstances when they has not occurred I introduced myself, and asked their name. Also is their an alternate ER your dad could go to? Generally my ER experiences have been good although few in number. But there was one that was a doozy. Some ERs now have a geriatric department within them. They can be outstanding
4
If you are forced to make many hospital visits, I'm thinking maybe you might invest in a cell phone that has a video recorder with audio. I wish I had had the presence of mind to do that during my husband's final, ultimately fatal, hospital stay.
2
How would the cell phone be helpful ?
4
My husband and I have been caregivers to my parents for 13 years. My Dad passed away in 1/2013 due to Alzheimer's. They had lived in their home for over 50 years and had hoped that was where they were going to end their journey in life. Moving them to a rural area, they lived with us until the addition(all handicapped accessible) was complete. With help from friends, my Dad was able to die at home. With this help, we were able to continue with our lives, working, raising two boys, keeping our sanity. I inquired on programs that would be of help, however they didn't qualify due to being over income by a few hundred dollars. A support group is about an hour away. I would not have been able to attend due to working full time. For the past 3 years, my mother's health declined rapidly. I finally threw in the towel and resigned from my position last year. I was not doing well either at work or taking care of mom. That is when the depression, isolation, feelings of uselessness, worthlessness set in. Even with the love and support from my husband and two sons didn't help me feel any better. Caregiving is so terribly hard physically but devasting emotionally.
158
Any chance you can hire an aide to provide respite care a few hours a week?
1
Hospice is now in our home. Mom's health is now to the point of any time to a few months. I have been able to run errands while the nurse is with her atttending to her personal care. It's been a lifesaver, having a few hours a week to do something, even running errands. To have family come and help, I have learned that out of sight, out of mind is the norm.
10
I am right where you are. This is devastating to my life. Women always seem to bear the brunt .:(
12
We are lucky...I guess. She currently is in an assisted living facility and requires 12 hours a day of one-on-one caregivers otherwise she could fall and we would not be able to control her care as well. She has Frontotemperal Dementia with Primary Progressive Aphasia and Parkonsian Affect. So her condition is complex and progressing rapidly. Mom is 71 and this time last year, had just retired and was living independently.
We are lucky....she had LTC insurance and savings. So we can handle this. Even with all this, I am doing more than a full time job of caregiving as well. I am the only daughter and the only family, so I am the point of contact for everyone. It's exhausting .
My brother filled in for me a few times and he was overwhelmed and shocked by the amount of work.
It's my choice and I am no martyr....but I have never felt so alone in my life.
We are lucky....she had LTC insurance and savings. So we can handle this. Even with all this, I am doing more than a full time job of caregiving as well. I am the only daughter and the only family, so I am the point of contact for everyone. It's exhausting .
My brother filled in for me a few times and he was overwhelmed and shocked by the amount of work.
It's my choice and I am no martyr....but I have never felt so alone in my life.
76
Try the online ftdsupportforum.com. Caring, nonjudgmental, international, & anonymous. There are good moderators & kind people helping each other 24/7. They were my lifeline during my husband's ALS/FTD. You are not alone there.
9
Online support could be a great tool. Another thought- perhaps the graduate schools in social work could have their students as part of an online group as a clinic. We need to be one more creative on how to get support to folks.
1
Mona: if your mom requires one-on-one care 12 hours a day...then her condition is too advanced for Assisted Living. In fact, I am surprised they are willing to keep her there and not transfer her to a dementia unit.
It is probably because YOU put in 12 hour days to watch her.
I am so sorry for your family, as 71 is far too young to have this advanced dementia -- it is more common on people over 80-85. But of course, you can get dementia even in your 50s (the movie "Still Alice" shows this in all its heartbreak).
Fortunately, you seem to have adequate resources -- most people cannot even hope for this, as LTC insurance is very costly.
I'd start looking into dementia units and full-care nursing homes. Assisted Living residences are for patients who still have decent cognition, and can do at least some tasks of daily living for themselves -- without falling. Your mom is past this point.
It is impossible for any one person to provide 12 hours a day of care like this -- 7 days a week -- 365 days a year -- 84 hours a week in a care facility! that means NO LIFE for yourself, just care for mom all day and go home to sleep. That's no life. Your mother would NEVER want you to destroy your own life. Find a nursing home.
It is probably because YOU put in 12 hour days to watch her.
I am so sorry for your family, as 71 is far too young to have this advanced dementia -- it is more common on people over 80-85. But of course, you can get dementia even in your 50s (the movie "Still Alice" shows this in all its heartbreak).
Fortunately, you seem to have adequate resources -- most people cannot even hope for this, as LTC insurance is very costly.
I'd start looking into dementia units and full-care nursing homes. Assisted Living residences are for patients who still have decent cognition, and can do at least some tasks of daily living for themselves -- without falling. Your mom is past this point.
It is impossible for any one person to provide 12 hours a day of care like this -- 7 days a week -- 365 days a year -- 84 hours a week in a care facility! that means NO LIFE for yourself, just care for mom all day and go home to sleep. That's no life. Your mother would NEVER want you to destroy your own life. Find a nursing home.
8
If family can't help, it's time to try to hire someone for respite. It can be a great thing to know you can relax for a few hours and a new face can brighten the day.
10
Most people can't afford to hire help, even for a few hours.
29
Sounds like something the organizations mentioned in this article should pay attention to: that is, if a family can't affford to bring in someone to provide respite, maybe one or more or these organizations could fund it so the caregiver could at least get out of the house for 4 or 5 hours once a month.
6
Yes, research. There are foundations that can help.
1
It's so very sad that we're a culture that so worships and elevates youth and treats those aging - which we will all do someday - as burdens, nuisances and "uncomfortable", not to be seen lest someone object. Wretched.
45
I think my comment disappeared. I've always been interested in our family history and I actually enjoyed sitting with my aunt and talking and looking at old photos and sitting on the patio. Some days she was able to walk out to the end of the driveway with me. We started taking care of her in August. She had a heart attack in October. Of course I was alone with her and drove her to the ER because she lived so far out in the county. I almost rear-ended someone. After the heart attack her attitude toward me changed. And then it got to cool for her to outside, so all she could do was sit in her recliner and watch TV. Occasionally she would glance through a magazine. She still washed the dishes by hand and I let her do as much as she wanted...make her own bed, set the table. She didn't want to get a wheelchair (free through Medicaid) so I could take her to the store or to get a burger. She had worked (as an RN, she could still take her own blood pressure) at the same nursing home she wanted to go to and she was in a constant state of frustration because she couldn't go NOW. She wanted to be around "people my age with my problems." At least she got that for 3 years.
19
I actually enjoyed spending time with my aunt for the first couple of months, except for the heat because she was cold all the time and trying to get her to eat and drink something in addition to milk. We had been close when I was in my 20s. When I was helping take care of her, we would sit for hours and talk about the family and look at old photos and sit on the patio. After her heart attack and the weather got cool, she got hostile towards me and refused to do anything but sit in her recliner and nothing I could do could help. It hurt very much watching a person who had been such a big personality disappear into herself.
26
@Robin Ashe: the tragedy of Alzheimer's is that the brain is destroyed, and the personality of that loved one -- the memories, the history -- go as well -- while the body remains.
I know most of your impulses came from a good heart and compassion, but sometimes those things go horribly wrong -- for example, your aunt had no right to demand you be physically miserable because SHE was cold. You should have put a sweater on her. You should have locked up the thermostat so she could not reset it (I'm amazed if she was that far gone with dementia, that she could manage to set a thermostat!)
There are limits to what you can do with dementia patients. Sometimes I think the refusal to eat or drink properly is a way of the person preparing to die. If you keep feeding and hydrating a body, you can keep it going almost indefinitely -- long past the point of quality of life.
There was a time with your aunt, when the family talks and old photos had ended, and she was PROPERLY in a nursing home. Had she gone into nursing care earlier....you and your mom might have been able to enjoy frequent visits and not felt like martyrs. Also it would have given you adequate time to clean out her home, without the pressure of doing in a few weeks in the PITCH DARK.
I know most of your impulses came from a good heart and compassion, but sometimes those things go horribly wrong -- for example, your aunt had no right to demand you be physically miserable because SHE was cold. You should have put a sweater on her. You should have locked up the thermostat so she could not reset it (I'm amazed if she was that far gone with dementia, that she could manage to set a thermostat!)
There are limits to what you can do with dementia patients. Sometimes I think the refusal to eat or drink properly is a way of the person preparing to die. If you keep feeding and hydrating a body, you can keep it going almost indefinitely -- long past the point of quality of life.
There was a time with your aunt, when the family talks and old photos had ended, and she was PROPERLY in a nursing home. Had she gone into nursing care earlier....you and your mom might have been able to enjoy frequent visits and not felt like martyrs. Also it would have given you adequate time to clean out her home, without the pressure of doing in a few weeks in the PITCH DARK.
2
Thank you for this article. Caregiving for a loved one with dementia is crushingly isolating. I know it affected my health and I often feel like I have PTSD. There are occasional good moments but on the whole its impossible to describe how much it hurts because you are grieving the loss of your loved one for years as they get worse, no longer recognize you & become unable to communicate with you before they actually pass away. It is extremely difficult to reclaim your life and reestablish friendships and relationships.
78
Yes, I felt a constant grief and overwhelming sadness and painful loss, and it took years for me to recover from it after my mother died of Alzheimer's disease. I felt so guilty about feeling so overwhelmed, but later realized I was re-experiencing a childhood loss, too. If only I had known. I only gained this insight through doing a type of therapy for PTSD called EMDR.
9
Here in Oregon we have senior centers that offer respite care. You can take your loved one there for a few hours and have the time to go to the hairdresser, run errands or just sit by a tree/flowers/ocean/fountain and relax. These centers offer activities to occupy the minds and hands of those who have dementia or other disabilities, so it is a good break for them to. Maybe these are available where you live?
32
Those don't work for everyone, unfortunately. Some resist being included in a group like that.
12
The reality is that the person who needs care because of physical and/or mental decline will have good days and bad days, and is dependent on another for daily living, company and even survival. They may not appreciate the reality that the caregiver needs a break and has to take care of themselves too.
Many caregivers are reluctant to set some boundaries and claim time for themselves. They feel guilty if anything should happen while they are away, or if the dependent person does not accept help from another substitute caregiver.
Difficulties will mount and resentment and exhaustion will result if the caregiver cannot find the determination to claim some time and space for themselves. Not everyone is able to assert that need and feel that it is good and legitimate - and more productive in the long term - to get a substitute skilled aide for a few hours a week and go put on the oxygen mask and breathe deeply to refuel and remember who they are.
Many caregivers are reluctant to set some boundaries and claim time for themselves. They feel guilty if anything should happen while they are away, or if the dependent person does not accept help from another substitute caregiver.
Difficulties will mount and resentment and exhaustion will result if the caregiver cannot find the determination to claim some time and space for themselves. Not everyone is able to assert that need and feel that it is good and legitimate - and more productive in the long term - to get a substitute skilled aide for a few hours a week and go put on the oxygen mask and breathe deeply to refuel and remember who they are.
13
Ugh...try getting them there and picking them up.
10
There's hope at least that the intelligence of a future day might usher in more enlightened geronticidal attitudes and laws than now exist.
12
Uh thanks. I am sure seniors everywhere are glad you invented the word "geronticidal" to mean "killing your elderly relatives off when they become inconvenient".
Unless morality changes 180º.... nobody is going to let you murder a Alzheimer's patient -- because this is NOT LIKE physician-assisted SUICIDE, where a patient in their full faculties decides to end THEIR OWN life.
You'd be asking to MURDER elderly people because YOU don't like caring for them or it is too costly.
Seniors with dementia cannot give consent.
I suppose you also want to kill children with Down's syndrome or other mental incapacity too -- for the same reasons?
Unless morality changes 180º.... nobody is going to let you murder a Alzheimer's patient -- because this is NOT LIKE physician-assisted SUICIDE, where a patient in their full faculties decides to end THEIR OWN life.
You'd be asking to MURDER elderly people because YOU don't like caring for them or it is too costly.
Seniors with dementia cannot give consent.
I suppose you also want to kill children with Down's syndrome or other mental incapacity too -- for the same reasons?
5
Friends and neighbors who offer help "just tell me what I can do" really are no help at all - it was difficult enough to know how to care for him without dreaming up little tasks for them to do. My husband had almost no voice, speaking was very difficult for him and did not want to use his very limited energy to try to talk to acquaintances or hospice visitors. It can be very isolating for both care taker and patient.
37
Would you have been okay if someone said something specific, like "I'm going to the supermarket tomorrow morning and can pick up anything you want, " or "I'm thinking of going to a movie tomorrow night; do you want to come?"
13
people only send atta girl post on face book..no personal help at all..when we left the tribal society, we set ourselves up for this disaster.
3
that would have been very welcome but it did not happen, I was on a couple of town committees that met monthly and I went to the gym or for a run most days as well. Aside from that my "outside life" was making supermarket runs. I do not belong to a church but sometimes wished I did as some go out of their way to provide meals or help to parishioners. What interested me was that long time acquaintances in my small town knew that my husband was terminally ill and yet made meaningful offers of help. I had enough to do without trying to turn them into good neighbors.
1
time to find a new hairdresser
104
Actually, her hair looks good. But I agree the salon people are being mean.
11
It is not just the salon staff, it is the customers. People with dementia are threatening--not because they would turn aggressive, though some do as the disease progresses, but because witnessing cognitive decline in the person with dementia engenders fear of such decline in others--for themselves or loved ones. I saw this when working in nursing homes. The more cognitively healthy residents may not want to be with residents with even moderate dementia in the dining room, at activities religious services. When the activities director tried to have activities for all residents in the secured dementia unit, those who did not reside in the unit refused to come.
Even clergy may have invalid or outdated ideas. I know Catholic parish priests and pastoral ministers who said they stopped visiting people in their homes because the "person does not recognize me/is not getting anything out of my visit." The latter is not true. Everyone (who desires or is thought to have a desire if religious practice was important in the past) has a right to pastoral care.
What is more striking in these reactions is that the priests and staff were completely oblivious to the needs of the caregiver, also often a member of the parish--who might not be able to attend Mass or other services because of his/her caregiving role and would welcome a visit as a tie to the parish community.
The salon situation is bad but if I had to remind priests of the needs of caregivers, sadly we have quite a way to go.
Even clergy may have invalid or outdated ideas. I know Catholic parish priests and pastoral ministers who said they stopped visiting people in their homes because the "person does not recognize me/is not getting anything out of my visit." The latter is not true. Everyone (who desires or is thought to have a desire if religious practice was important in the past) has a right to pastoral care.
What is more striking in these reactions is that the priests and staff were completely oblivious to the needs of the caregiver, also often a member of the parish--who might not be able to attend Mass or other services because of his/her caregiving role and would welcome a visit as a tie to the parish community.
The salon situation is bad but if I had to remind priests of the needs of caregivers, sadly we have quite a way to go.
31
It is so difficult for family members, clergy, kids, friends etc. to be with a loved one who raised them or were a presence in their lives to face cognitive decline. It's very hard when the loved one such as mother, father doesn't recognize their children. It's heartbreaking. Caregiving is not for everyone. It's a gift and many of us usually have to look after or take care of at least one or two persons sometimes more as parents age and as friends, and family members age. We have to forgive ourselves and sometimes allow someone else to step in from time to time. I read the comments that many are unable to afford to pay for a companion, or an assisted living facility with qualified medical staff available 24 hours. The population is getting older, baby boomers are retiring and aging. It seems to me that we who are able can begin some kind of national mandate in the states, towns, cities that we reside, for a program that helps all families with their aging and or cognitively impaired loved ones who suffer with dementia, alzheimer's disease etc. This seems to me to be an national crisis. Everyone can't resign from their jobs, or even if they could or had the resources everyone is not cut out to be nor should be a 24 hour caregiver especially to their aging parents.
6
Where to begin. This article is great and hits on the key topics that those of us who are caregivers experience, feel or mostly can relate too. Caregivers, we are in a silent bubble. As much as we don't want to alienate ourselves from the world we are forced to, to focus on our loved one(s). I myself had to cut myself off from the world to care for my mother who had already had two mild strokes and was as stubborn as a mule. I allowed time to dictate my moves because reasoning with her was pointless. Time took 4 years and then came rushing in. Overnight, I was handling her life and mine. I was slipping mentally. Physically, I just worked out to keep my stress down. Yoga, spin, walks. I stayed away from wine and anything that would make me even more depressed including people who complained or whined. I was in my own cave for months until I got my mother back on track. I communicated only to a few family members & friends. I cut her friends off completely. Gossip and constant status checks drove me up the wall.
My mother is currently happy in her new home with people who care for her as I would. Shes laughing and has her wits back. Mission accomplished. However, I had to find my balance in life again. I started dating someone and even that scared me at first. Baby steps. I started to go out with friends but in the back of mind I sometimes wonder am I communicating as I normally did. I feel like I'm playing catch up to my life that froze for 8 months.
My mother is currently happy in her new home with people who care for her as I would. Shes laughing and has her wits back. Mission accomplished. However, I had to find my balance in life again. I started dating someone and even that scared me at first. Baby steps. I started to go out with friends but in the back of mind I sometimes wonder am I communicating as I normally did. I feel like I'm playing catch up to my life that froze for 8 months.
87
My mother and I took care of my aunt in her home for 9 months, 24/7, one with her for 24 hours, one at home "resting." My aunt was an independent person to the point of becoming solitary. Her own daughter delegated the responsibility to us because "my career." I called the whole thing to a halt when my aunt tried to attack me for pleading with her to eat, called my cousin, told her TAKE CARE OF YOUR MOTHER. She took care of getting her into the nursing home. Guess who got the job of planning every aspect of the funeral? Guess who came to the service just before they closed the casket and disappeared afterward? Guess who hasn't picked up the boxes and boxes of her mother's personal belongings after we cleaned out the house?
The isolation was suffocating. My mother and I couldn't both stay overnight at my aunt's house because we both had pets. My aunt never was an animal person and refused to move into my mother's guest room because my mother had cats. Our lives consisted of pack up, go home, animal care, sweep floors, shower (my aunt insisted that her thermostat be set on 80 degrees IN SEPTEMBER) eat something besides the soft food diet my aunt required, sleep, change off duty the next evening. We never saw our friends and rarely other family members.
We have not recovered. We are still isolated. We have to walk around boxes of her things. My mother and I should be in therapy. We can't afford it. It will never end.
The isolation was suffocating. My mother and I couldn't both stay overnight at my aunt's house because we both had pets. My aunt never was an animal person and refused to move into my mother's guest room because my mother had cats. Our lives consisted of pack up, go home, animal care, sweep floors, shower (my aunt insisted that her thermostat be set on 80 degrees IN SEPTEMBER) eat something besides the soft food diet my aunt required, sleep, change off duty the next evening. We never saw our friends and rarely other family members.
We have not recovered. We are still isolated. We have to walk around boxes of her things. My mother and I should be in therapy. We can't afford it. It will never end.
84
Time to donate those boxes and try to reclaim your lives. I know that it is hard. My disabled son just moved out and into a group home giving us more time for ourselves. But we both miss him and try to restart normal social lives, which were limited for 22 years. Wishing you the very best!
53
I hope I've raised my children to have your empathy.
5
I, too, admire your empathy. I also feel compelled to echo the advice to donate the boxes. Give the daughter a clear deadline, and do it. Daughter can rent space elsewhere if she wishes. Save anything you have an attachment to (and have space for) but don't let someone else's STUFF dictate how you live. In her earlier days, I'm guessing the recipient of your loving care might have agreed. Life is precious, but brief- don't waste yours providing free storage.
18
One thing the article does not mention, which is a huge part of the isolation for those of us caring for a spouse. If you have a halfway okay marriage, your spouse is your "go-to" person in discouraging or unsettling situations. But the unsettling situation IS YOUR SPOUSE. I find myself still being distressed by some new downturn in his condition, wanting to reach out to him for support, and then drawing back...realizing that turning to him will only increase the sense of unease. I am sure he experiences the same. As he slows down ever more, I have to speed up more to take up more and more of the slack. We become out of synch in the most basic ways. I have become a sort of speed freak, trying to tend his needs while keeping up some fraction of a,personal life of my own. He sort of dodders along. I am sure he doesn't find me real relatable either...I have to tell him he can and cannot do things, infringing upon his autonomy, but it can't really be helped. It's often for his or our own safety. Our marriage is severely strained, at times seems in tatters.