Sending the author, and family, a lifetime of hugs prayers and smiles. I had no daughter to sing to my alzheimer dad, just rainbow chasing and a german phrase meaning, that's sloppy, yes ! Its the humility, resulting from being shown our own frailties and dependencies that produces unadulterated love between us.
Leslie that was a nice article. At times it seemed like if you were describing one of my days. My mom passed away in 1991. I was 16 or 17. But so many striking similarties on your take of a day in your life it at times seemed as if it was a page from my diary, well if I kept one. This was my 1st time reading something from you and liked it. I will keep reading your columns.
My eyes are filled with tears.
2
Roz Chast's "Can't We Talk About Something More Pleasant" is a cathartic memoir for anyone dealing with aging parents & parents with dementia. It is a gift to allow yourself to laugh and cry at frustration, feel like you have permission to be angry and take time for yourself, and then get back to the work of being your parents' parent.
Thanks for this piece, and best of luck in remembering that it's OK to tag someone else in to help you recover your equilibrium, even your 5 year old.
2
Beautiful in every way. Not just a great story, a great lesson, but so well written with vivid imagery. Thank you.
2
Oh how grateful I am to read this. It applies to many areas were I've lost patience. What often seems intentional just isn't.
2
I guess I took it for granted that my mom couldn’t even pick up a telephone when she was sick with Alzheimer’s.
1
Like the evening breeze through your window, this was indeed a breath of fresh air. Thank you.
4
Wish I could think of a fresh way to say how beautiful, and incredibly moving, this article is. But there it is.
5
This is absolutely great. Thank you.
3
Lovely. I commiserated, I judged a little, I sympathized; and then I cried and I smiled.
6
Just lovely. Thank you for this!
4
Another feel good story from The New York Times! Is Reader’s Digest still publishing? I need to read that Laughter Is The Best Medicine Section!
1
this is beautiful. and we have a version of it in our house. my mother does not hear well and she is on auto-repeat much of the time, with a need to talk talk talk. it tries my patience. but sometimes she will get my 10 year old daughter on the phone and my daughter will just listen patiently for many, many minutes - often hearing the same thing a few times but just looking up to smile at me and mouth the words "she's telling me that story again!". she has the patience for it that i lack and the ability to love more purely, to be honest. sometimes i will shout at my mom and my daughter will catch me and ask "why are you yelling at grandma?". i will try to pretend i'm just talking loudly because she can't hear but my daughter never falls for my weak attempts to rationalize. "no, you are YELLING AT HER. she can't help it! she can't hear, it's not her fault. stop yelling!" she will tell me. and my heart melts for her and breaks for my mother who was just subjected to my wrath. i am hereby vowing to put the kid on the phone more. for both of their's sake. and for my sanity.
9
My roommate's mother who lives with us repeats the same questions over and over and over in a very short time span. When we read in a book that dementia is brain damage it helped us re-gather our patience when it starts to get lost. We remind ourselves, it is brain damage, she can't help it.
Also I like to think that my own dear mother is watching me from above, and I wish to make her proud of me.
9
Thank you. I cried, but I loved what you said. I too miss my Mom.
7
Visited a local coffee shop this morning and ran into someone I had met last week. He was in town visiting his dementia stricken parents and my grandmother was visiting from NC and also suffers from the disease. Today I was able to meet his beautiful wife. We talked the morning away over coffee about our experiences with our loved ones. I spoke of how last night was the toughest yet and that my 3 year old was the only person who could connect with my grandmother. It was such a calming experience that allowed me to breathe until her next rage moment struck. His wife then mentioned this article that she read in the NY Times several months back that mimic my story. I decided to look in up once I got to my office. This has been a very enlightening journey and I am so grateful for the couple that I met in the coffee shop and for this article that proves that we are not running this race along. Sometimes the smallest person in the room makes the largest impact. Happy Holidays!!
7
My grandmother would call when I was in high school (just a landline then) and ask to speak to my mother, late in the afternoon, (sundowning we now know) and I would deflect her with answers, she's at the store, she's at the train station picking up my father. Then the reason for her call would come out - where was her handbag usually. I would go through the likely hiding places with her and guess what, sometimes I got it right! This is a long time ago, but I remember it so clearly. It was the beginning of a long slow end ...
5
I almost cried (at work) when I read the end of this article. My Dad and my mom both had dementia towards the end of their lives (not at the same time.) My dad had it first, and my two sisters and I each took a day staying with him in their house when mom went to Rochester MN with her lifelong friend (we live in MN, and they'd been going once a year for a long weekend for as long as I can remember). It was exhausting. Every 5 minutes Dad would get up to call mom (at who knows what number, since he didn't have the number of where they were staying) and we'd have to remind him that mom was in Rochester with Iris. This went on all day. Then he'd ask the same questions over and over. He was really quite anxious without mom there. I don't think I really understood what every day was like for mom until that day. He was like that for at least a couple of years before he broke his hip, wound up in a nursing home, and passed away a few months later. I loved both my parents and still miss them now and then, even though it's been 16 years since dad died and about 6 since mom did. Dementia, and end of life, is not kind.
9
It would be nice to hear regular tales from the land of dementia. We have been caring for my mom for 5 years and your writing is so true. The unmooring and unraveling of a mind and the exasperation with things "not making sense" do have some surprises. My mom looks at the same mountains and sky she sees every single time we get out to drive. "You're missing this!" she tells me and then "Where AM I?". It's a strange ride.
8
Beautifully written. It was like reading a story about myself. Thank you for putting your feelings out there for everyone to read; it helps to know others feel the same way I do. Take care of yourself and best wishes to all of you.
12
I know it's difficult (my mother also had dementia and died 3 years ago), but yelling at her doesn't help. They don't understand. I wasn't very good about this with my mother, either. Later she was unable to call me and she couldn't pick up the phone when I tried to call her. I missed being able to talk to her on the phone at all. The last two years she could only speak gibberish (in person).
7
Fabulous story!! It says it all. I'm the clinical course leader for geriatrics for 2nd year student nurses and I'm going to share this article with them all (120) and their instructors. Dementia is so difficult for everyone and especially for loved ones. Take good care of yourself and thank you for this beautifully expressive article.
11
Thanks for this. I used one of the ideas today and it worked great.
8
A lovely tale. Just remember that it is not possible to re-orient a demented person. Agree, lie, whatever to keep you both calm. Yes we will come to see you tomorrow. Yes the bus will come very soon. Keep yourself sane and as relaxed as possible. This is not unethical - it is justice.
23
Absolutely right. Join the person wherever they are with gentle and reassuring words. Dementia is a long goodbye.
13
This beautifully written article speaks for legions of caregivers and families who have had similar experiences. Like you, I witnessed my dad's dementia as an instant event that he lived with for over a decade (surgery meant to correct damage from a WW II brain injury backfired). Many more people see a slower change in their loved one, but a similar change none the less. Thank you for this exquisite testimony to the complexities of dementia and caregiving.
10
This is heartbreaking and so lovely, thank you Leslie Kendall Dye for sharing this with us.
10
Tears! What a beautiful little piece. Children show the way.
11
"From the mouths of babes," "And the children shall show the way ..."
Special, special piece. Thank you. You are clearly doing a great job as a Mom.
And your daughter is spectacular.
I wish you a full recovery.
9
My mom suffered from an early onset dementia. This poignant piece brings up so many emotions and memories from her last years. Thank you to the author for writing something that so accurately describes the frustrations and joys of this time. As I️ look back I’m grateful for the time my young children had with my mother.
7
What beautiful funny sad sensitive article. It touched my heart. It brings back memories of my Dad's Dementia. For some reason I can't explain I understood that every time he asked the same questions for the umpteenth time, for him it was the first time. Occasionally he surprised me. After answering "Where is your mother", with " She is in town" he surprised me by answering " You said that last time." I realised I needed to be involved in the conversation. What helped most was doing something like going for a walk , or coffee or meeting friends who understood. Best of all he loved to sing or listen to music. We went to tea dances and watched the pretty ladies dance. Shortly before he died he asked me in a rare moment of recognition " Do you still love me, Mimi? We need volunteers to support the carers. Now in my seventies I too may share the fate of my dear father.
9
Boy does this bring back memories. If you're interested, please read my book "Did I Ever Have Children? An Alzheimer's Journey in Two Voices" -- I went through what Leslie so beautifully shared for almost nine years.
3
It is a cruel ending to a beautiful life, and an understandably stressful emotional experience for the loved ones who witness it firsthand. May you all find the strength and dignity to see through the disease with love and patience despite your human limitations. One day any of us may find ourselves on either end (or both) of failure of the human brain, and it's associative fallout on our loved ones.
9
Leslie Kendall Dye's "This Is How You Pick Up a Phone" is exquisite. Going through the dementia journey with my mother right now, I needed to read this. Thank you thank you.
7
Since August 2009 when my mother had a stroke, she's both depended on me and hated/loved me. My shortcut is that she tries to break my fingers almost every day - not as often any more - but it describes the illogical rage she exhibits towards people when she's not in her right mind. Every once in a long while she apologizes. I was pretty bad to her all during my childhood: a perfect storm of misunderstanding, which makes it easier to put up with her. But there's no grandchild. Anyway, all this is to say, that person is sometimes there and sometimes not.
Please try to love yourself: both your mother and your child need you, as little as they may understand it. (As long as "Alexa" or some other fake mom doesn't get in the way.)
5
The struggle of having a mother who's not your Mom, who can't offer Momly things, and doesn't even really remind me of my Mom, is real. My Mom has dementia, and can't really talk on the phone anymore, but occasionally, in person, there's a flash of her old self. This summer, one of my great-nieces fell, and in tears, said "I want my Mommy." And I thought "I want my Mommy, too."
14
Thanks for the touching story. I'm going through this with my Mom right now. She lost her husband (and me, my Dad) last year and has been relying on me to be her best friend, protector and surrogate man of the house. Just when I thought things couldn't get worse, Mom had a stroke this past Mother's day and with it, she lost much of her mental capacity. I can relate to everything you're going through. Please don't be too hard on yourself. It's your love and warmth for your daughter that's allowing her to love her Grandma the way she does. You're protecting her from having to deal with the harsh realities of being a grownup, all the while you are still there doing the best you can for your mom. you are the one dealing with the good days and not so good days. So please be easy on yourself and give yourself a pat on the back.
9
I just had to write and thank you for creating this powerful and beautiful piece ~ I am going through the same thing balancing my dementia-ridden mother and my 6- year old. Everything you said hit home so hard, thank you for voicing what I have been unable to voice to my friends and family who are sympathetic but have not yet walked in these shoes.
10
I've played the good person game many times with my grand mother, and I mostly fail. Thank you for this article xx
2
Thank-you for this article. i just called my mother to say hello.
I'm so lucky I have her to just say hello!!
9
The spectrum of required patience and compassion extends from aging parents to raising autistic children to incredibly annoying coworkers or tedious people in the checkout line. Developing personal reservoirs in the face of mental exhaustion etc is part of maturity and is a life long process. .
19
Tolerating an annoying coworker or tedious shopper in the checkout line is hardly akin to caring for and experiencing the brutal decline of an aging, Alzheimer-afflicted parent.
9
I think you missed the word "spectrum" in that comment. I found it to be a smart and compassionate notion.
4
I've spent 2 decades in eldercare, half of it working in residential facilities. One of the first things I learned about was the "memory book." If she can still read, give her a little booklet with the answers to her most commonly-asked questions. "I am.... I had a stroke, that's why I don't remember things. I live in..., I've lived here for x years, and I'm happy here. No one is kicking me out. My husband died in x. My children are xxx. My best friend is x and visits me on Tuesdays." Balancing your own well-being with that of your loved ones can be challenging, but your peace of mind is not expendable in the quest for hers, nor do you have to everything "by hand."
20
That is a great idea, thanks for sharing.
1
Nursing homes, etc., allow trained aid-dogs in to visit and help the elderly, lonely and depressed in facilities; we need a core of lively, fantasy-driven children like Leslie's daughter to manage Happy Hour for them too. All relatives need to be screened for the sympathy gene; I would not have passed as hard as I tried to manage my Alzheimers mother. My children would have passed the test when they were youngsters. Yet, yesterday, one of my daughter's toddler had an acute ear infection; she text me a note from the doctor. I sent back a loving, so sorry reply. And, then told her I was at the doctor too, and proceeded to tell her for what. She snapped at me and said she had been up all night with the crying. I wanted to snap back at her and say how I had been up weeks with her ear problems but I didn't. In that moment I foresaw the future if something more drastic happens to me. I'm 70 and lively and still working, yet, perhaps, the chickens are coming home to roost.
3
My mother died from Alzheimer's. My father recently developed encephalitis and no longer has short term memory and "sees dead people." Patience is not my strong suit and there have been explosions, but thank you for reminding me that in the end they are (were) my parents and I need to love, support, and take care of them like they did for me. It's hard but God only gives us as much as we can handle, right?
6
Oh, if our mother was still here! But I appreciate the author's sentiment and it's not easy to take care of elderly parents. Be easy on yourself please.
5
I was raised by my grandmother. After my mother separated from my father when I was 8 months old and remarried, she seemed to forget that she ever had a daughter. Eventually we would meet at family gatherings, but never had a mother-daughter relationship. My father died very young and my grandmother died when I was in my early 20s. Then I started dating my husband and he insisted on meeting my mother. From that day on, I started having a relationship with her that slowly evolved to a mother-daughter one. I got married and had 2 kids and my mother was the best grandmother I've ever seen. Later on she had Alzheimer's and we cared for her emotionally and financially. We forgave each other and she forgave herself. She died peacefully last year
10
Thank you for this essay. I understand and I feel validated.
4
oivay - my mother called this morning also - one of many calls...I talked to her but then quickly told her I had to run - I have lots to do, appointments, errands, etc......AND then I picked up the paper to see this article - oivay....
5
Your essay made me think about all I have learned and not learned in the past year I have been working at an assisted living facility. Love and patience mean so much. And it is hard to do sometimes. Its easy other times. That’s just how it is.
8
Ditto on so many previous comments, a beautiful piece of writing, thank you. The 6th phone call of the evening and,"do you have a minute?" are all too familiar along with the endless loop of questions that lead back to the beginning. As I head to my mother's this afternoon, I will challenge myself to have the grace of a 5 year old.
9
Thanks for this. It really hit home. I try and try to keep my patience, but sometimes, after the umpteenth phone call, I just can't stop myself from lashing out. Thankfully, she never remembers- but I do.
7
Until this moment, I hated the music from Annie. Thank you for an extraordinary piece.
4
I am in tears. You are lovely.
9
Lovely life lesson. Thank you.
9
There is ample evidence that you have already raised a beautiful child.
There’s an old saying, “The reason that grandchildren and grandparents get along so well is that they have a common enemy.”
12
I just read this to my wife - we are both emotional now! Such an honest sharing. Thank you
5
Your daughter should start an answering service so she can talk to everyone’s compromised parent, family member, friend.....
7
There is something for everyone in this piece; if not now, then in your past or in your future.
9
Thank you
1
All of this resonates with me as I try to be a good daughter of a mother with dementia.
6
Thank you for sharing this moment. Your writing is excellent.
2
We have a father with full blown Alzheimer's (noticeable 12 years ago). Due to drama from some other family members, we expended a tremendous amount of energy, frustration, angst, and persistence to get him out of his remote (5+ hours from us) and isolated home to an assisted living place 15 minutes from where we live. Going through the process was agony, but we knew it was the best thing we could do for him to keep him safe and where we could be a presence in his life.
That was two years ago and we are fortunate that he is in good physical health at age 91. We visit 4 days a week and go through the same litany of repetitive "conversations". It has not been easy to watch the decline. He remembers nothing but is happy, lives in the moment, is a staff and resident favorite, participates in all the activities singing his heart out (he remembers all the old show tunes). His personality is still there and sometimes it comes out in unfiltered ways :)
Our adult children have been so supportive of our decisions and the care we have been able to provide. As difficult as things have been, we are truly blessed and grateful. We too have learned to live and enjoy the moment, remove guilt when we have been abrupt or exhausted. We are all human; not perfect.
10
A gorgeous piece, relatable to so many. Mom had vascular dementia to accompany kidney and heart disease among other issues in a sad too early decline. She lived in florida with my sister Kathy, a nurse, who bore the repetitions, paranoia and time warps that plagued our dear sweet Mom. It wasn't easy. I on the other hand was lucky to swoop in from Ct...Id take her to the beach, watch movies, make her laugh...essentially i was like your 5 year old. Trust me- the hard time you and my sister and so many others put in for elder care is the true heroism-wether it is delivered with occasional anger or practiced patience. Bravo to you both.
4
This made my day. What a lovely piece of writing and I think so many readers are giving you and your daughter and your mother a virtual hug.
5
Thanks for the early morning tears.
The keys are blurring in and out of focus as the words spill out across the screen.
Good job.
3
There's a reason why angels are depicted as children in art. Your daughter is an angel, and so are all children. Can't tell you how many times I've been taught by my own. Take care of yourself, you are a wonderful daughter. To your mom, you will always be her angel.
2
You perfectly captured our experience, too. Thank you. We sometimes feel like we are the only grown children struggling with our parents' dementia, phone calls, loneliness... and our own GUILT. It helped to read your beautiful essay.
5
From the mouths of babes. May I learn from your daughter's simplicity to connect, and glide through so seamlessly that which we make so complicated.
Well written, thank you to you and your daughter.
3
How wonderful you are. I am in your shoes. I tell myself that I would visit my own mother more often if the drive was less than 7 hours. But I'm not so sure. The rage that fuelled her mental illness for more than fifty years is now gone. When she sees me, her face lights up. She recognizes me and her sister but after that she retreats to her mumbling self and I'm relieved.
1
when i was about 15 i watched my mother deal with her father in a similar situation. she cautioned me to never forget what i had witnessed. 35-40 years later, when dealing with her and my dad, i always remembered that night. i can only hope my own children learned something positive from my interactions with my parents as they declined.
bless you for writing this
3
I WENT THROUGH SO MANY EMOTIONS READING THIS ARTICLE.
MY GRANDCHILDREN DOT ON ME HAVE PATIENCE WITH MY IMPATIENCE. MY GRANDSON EVEN TOLERATE MY SNORING (LOL) I TELL HIM I DON'T.
IN GOING THROUGH PHYSICAL CHALLENGES NOW. CAN'T RUN OR HAVE SERIOUS FUN LIKE WE USE TO.
I'VE PRAYED MY CHILDREN WILL NOT BE TOO BUSY OR FORGET ABOUT ME.
I PRAY I KEEP MY MIND SHARP.
THIS WONDERFUL CHILD SHOWS WISDOM COMPASSION PATIENCE.
TO THE WRITER OF THIS ARTICLE DON'T BEAT YOURSELF UP. YOUR DOING THE BEST YOU CAN.
4
I read this article with sadness. I am 74 years old, and all I could hear throughout the mother's tirade was "Poor me!" In fact, the article was mainly about her - she's tired, her house is a mess, she just had an operation.... I remember feeling the same way when I was working a demanding job and had a busy life too. I wasn't the perfect daughter but I don't remember yelling at my mother when I grew impatient with her. I tried to find some space until I could at least be caring and civil to her. This worked most of the time. I think I knew underneath it all that the problem was me, not her. Now that I am in that aged role, and have time to actually stop and think about life, I realize that relationships are the only important thing in life. Nothing else really matters but the love we are able to continually give and give and give. And the patience we are able to muster up. And the ways we can find to take care of our own needs so they don't get in the way of our taking care of others' needs. I hope the mother in this article can read her article objectively - she is not the daughter (or person) she can be. Good luck to everyone who also needs to take a hard look at her behavior.
Very young children are perfect companions for the elderly. In a few places daycare centers are built next to assisted living facilities and everyone benefits - I wish it was more common. When I take my noisy grandchildren to visit my 93-year-old mother, all the residents are enchanted with them, never bothered, and the children are not offended by the signs of old age that distress adults.
3
You express the frustration I so often felt when my mother called 7 or 8 times a day. You did and are doing the best you can. She is safe and well cared for in an assisted living facility. Don't beat yourself up, you are obviously doing a good job, look at how your daughter responded with love to her grandmother. That's a reflection of who you are. God bless all those who are in similar care-taker positions, it is hard, demanding work. But when the job is completed you will know relief and comfort. And that will be priceless.
4
Thank you for this essay. Needed to read it far more than the headlines in the news.
3
Love this essay and will come back to write a comment as soon as I wipe my eyes and get some more kleenex for my nose.
28
And a child shall lead them. Be in the moment. Put aside the angst. Let the heart speak.
25
My sentiments exactly. Lovely.
I'd give anything to talk to my mother again, even like that.
23
I wish I'd had daughters instead of sons.
5
Why? Boys can be just as compassionate and caring as girls.
3
And I’m sure your sons know that.
1
Both are good and bad. Sometimes my sons comfort me more than my daughters.
1
This one made me choke up, and I read it at work! Dangit.
9
Thank you. Can I borrow your daughter? Mine are in their 30's and I have no one to redeem me.
17
Lovely. Thank you.
12
Very sweet. Please let your daughter know how perfectly she handled that situation and take ownership the next time.
10
I don't think she "handled" anything, she just talked to her granny.
3
Classic college campus attitude: Tell a caller to call you back later because there is no way you will return the call when you get back from vacation. (I'm pretty sure that is not what the trainer had in mind when he or she suggested that you should tell the truth.) That may work in the ivory tower. But that nonsense doesn't fly in the real world where there are things like accountability and consequences.
This comment was meant for another article, Sorry about that!
1
Really, really lovely. Maybe you could give your darling daughter an official JOB. Talking with her Grandma, daily. Great for both. Best wishes.
12
years later, tears hiss on the singe of the memory of love tangled with all of this
7
Funny how this disease progresses. My Mother started with "memory issue" at age 83. In a year she was calling wanting to know what my 15 year old daughter had done with her good tea towels. Sometimes 3 calls in a row like the others did not exist.
I always told her the truth as I saw it. Maybe not the best way when dealing with a fleeting mind. My wife and I both have demanding, long hours jobs so I put out a call to my sisters for help.
Fast forward 18 years and Mom was living back in Illinois in an assisted living and was just a bright light in a normally staid environment. She was happy and laughing a lot of the time. She had no worries and had fleeting memory of things that happened yesterday.
So hang in there if you can. I think the only pleasant part of the disease is toward the end. Mom died from aspiration pneumonia and congestive heart failure 10 months from her 100th birthday. I choose to remember when she went from a paranoid, depressed person to an exact opposite, happy as a child living the good life.
My thoughts to all that are living and trying to care of a significant other. It's a hard and rough road and still no cure in sight.
Meantime this administration would rather build bombs than funding research for this horrible disease that robs people of their dignity and mind.
36
Poignant. Thank you! I wept.
9
The flood of memories this story brought to me is almost overwhelming. Slightly different circumstances. My mother was manic depressive. On her meds. Off her meds. Phone calls from the police to come pick her up and commit her. She would call my at work 'just to hear my voice.' All this while going through a divorce and taking care of two young children. I would lose my patience and not be very nice. My mom died in 2005 from kidney failure due to Lithium. I Everyday I feel horrible and wish I could do it all over.....I am so sorry mom.
20
Slightly different details, but your story is also mine. I'm with you about feeling horrible and wishing for a do-over....... We did the best we could at the time, however, and somewhere, deep in your mother's heart and mine, they knew that. Forgiveness is what mothers do don't you know. Peace and Blessings to you.
4
You did the best you could at the time. I’m sure she appreciated the love and help you could give. ❤️
5
Everything is mutable in this terrain. From minute to minute, sometimes almost imperceptible other times like a torrid wind it can knock you down and have you yelling out, "I quit". You're finding the beauty in the moments as well as the pain and heartbreak, and your journey is to treasure.
7
Absolutely gorgeous. What a beautiful story and lesson. Thank you.
13
My mother had a serious stroke which, fortunately, did not impair her mental faculties. My father, who was 75 at the time took care of her at home for ten physically demanding years before she died. I had a demanding profession and three small children.
I did all I could to help my parents, as did my husband. I often tell my friends who face the challenges of elderly parents that they will be glad they were able to help and they will only be sorry that they could not do more. But, you can only do the best you can and the author is truly doing that.
I commend her and her lovely young daughter.
24
I attended church service this past Sunday and they served breakfast afterward , I went and grabbed a seat next to a group of gentlemen ( we don’t know each other so just said hi and that’s all). We said hi and they resumed their conversation about a one of them (in his 60’s maybe) had a wife in a nursing home that had a dementia . It’s more than a decade he said and I really feel lonely. Kids are old and left the house but my mother in law he said always around and kept reminding me that I’m still married . But she doesn’t recognize anybody and doesn’t talk anymore . But I really am lonely he said and really need a date.
What a tough situation I thought.
What would one do?
3
What a beautiful testament to the human spirit- all of yours. Thank you for sending a lovely evening breeze into my heart.
10
Thanks for this story, it resonated. It's interesting to see how my kids and my niece and nephew deal with my mother who has dementia -- three of them 16-21, are incredibly loving and patient with her (because they still remember what a loving grandmother she was, pre-dementia -- and she still retains that love at her core), whereas my son, 17, a very sensitive soul, finds it incredibly hard to deal with who his grandmother has become. We have to find a cure for this horrible disease.
8
What a really lovely story. I am putting to bed the life of my stepmother, which ends up also including the lives and property of my father and long ago, my mother. I've taken care of all these aged and infirm people, and "I know". I did not have a daughter to soften things -- they either softened or they did not, but in the end they all worked out incredibly well, sometimes with heavy lifting.
Thank you.
10
Somehow your daughter sees in both you and your mother how to care for each other.
25
Hmm - so I am a very healthy 67 going on 45. Still a lawyer, dating, cycling, you name it. I am going to give this to my two spoiled grown daughters, one of whom is a professor of medicine who have zero patience with me for whatever reason. I don't even talk too much. I get mistaken for my grandkid's mom. And I have no real medical issues except . . .
I do have a mild hearing loss which is manageable (it's genetic). I do not choose to have stuff in my ears yet or to spend $7000 every 3 years. They are upset because I can't hear them from another room or when they walk in front of me talking quietly. Seriously. They are so fortunate not to have this burden. People don't know what they have.
62
My grandmother, who had some hearing loss, once told me she'd rather be blind than deaf. When I asked why, she replied, "Because if you're blind, people help you across the street. If you're deaf, they get mad and yell at you." She had a point. My sympathies.
27
Leonora, please get hearing aids for yourself, not for your daughters - you have no idea what you're missing. You deserve to know everything that's going on and it will keep you young!
25
Please know that hearing loss often leads to cognitive impairment. Hearing is such an important channel of sensation and information for our brains that reducing what we hear critically reduces the stimulation and formation of neurological connections. It's well known, on the other hand, that social interaction helps prevent cognitive decline and even improves brain function--hearing well is the key to conversation with others and meaningful social relationships, old and new.
So please get good medical advice on your hearing problem, and invest in hearing aids. It's so important for maintaining your brain health as well as your quality of life!
2
THANK U, Leslie, for writing this! My twin brother and I had a Mom who had a 'freak' illness, which wiped out her short-term memory bank the year she retired. Our Mom, our WORLD and our ANGEL (protected us from our Father growing up), went from the smartest, kindest, most creative, incredible woman, to one that was often frightened and unsure, who had lost her confidence, felt increasingly isolated, and, who had little interest in being a Grandma to my Brother's 2 girls, which made him so sad. It was groundhog day every day. We learned how to talk in the present and not refer to anything in the past. It broke our hearts. Yet, the grandkids did not seem to notice-they interacted with her 'in the moment' and they were 'present' with one another. Unfortunately, then, due to gradual increasing dementia (Alzheimer's), she had frequent melt-downs, rages, unkindness, selfishness, sudden inappropriate displays in public, fear, sadness (crying jags), you name it. I felt so much guilt over losing patience with her, due to being yelled at, her foul language, her impatience, her demands, meanness. The person she became was nothing like my Mom. It felt like endlessly losing her. Finally, when she died, she had reached the point in her Alzheimer's where she seemed happy, placid, kind, appreciative, and so, so loving. When she passed, it was unexpected. It was July 2015 and I still feel like I'm grieving. I realized that I missed the child my Mom had become to me. And, I still miss my MOM.
55
Oh, this brought back memories. My father suffered from dementia that, looking back, had its onset in his early 60s. My Mom became his caretaker (often openly discussing her travel plans after Dad passed) until at 80 she suffered a stroke. In a cruel twist, he could speak but had the agitation and memory loss described here while my Mom was aware but stuck behind a curtain of aphasia, repeating "idunnowha" over and over and over. He would ask the same question repeatedly and I finally figured he wouldn't mind hearing the same answer likewise : e.g "so, whaddya think of Bob Dole?" "Not much, Dad, how about you?" I pitied my previously vibrant, talented mother until I noticed something. The burden of caring for Dad was gone. They would sit in front of the TV holding hands, Dad still talking to her, always waiting for her answers, never impatient or critical. And my rather perfectionist mother became loving in ways small and large to us all. When she died (yes, 6 mos before Dad) I mourned both the dynamo I admired and loved until she was 80...and the gentle soul I cherished until she passed. If you stop trying to pull aging parents into your world and accept theirs you'll be a lot happier. I sure was.
43
I was often somewhat impatient with my aged mother - impatient when she didn't want to try something or was a bit of a backseat driver, or indecisive about what to buy, etc.
I'm getting close to seventy now and fancy myself as sharp as ever, but have noticed, for some time, my daughter getting snappy and impatient with me.
What goes around...
38
Well, it's sweet. My own children were not so noble. They used to hear the talking caller ID on the phone announce "grandmommy" and start yelling out, "I'm not getting it" and "not me!" and "I'm not here, I'm not getting stuck with her." But my mother had narcissistic personality disorder, among other things, and was very difficult even before the multiple strokes that fried her brain because she insisted she did not need hypertension medications. She never morphed into the charming grandma in the story, and I can hardly blame my kids for wanting to avoid her. Yes, this is a sweet story, but I suspect it's the contrived reality the author would like to have.
6
Thanks for sharing your story...caring for our aging loved ones is a daily challenge. When she is gone....you won't regret the effort you're making today. Take Care .....
20
This sounds like such a familiar occurrence for many families; I don't recall losing my patience with my mum to quite the same extent, but I know that I was curt with her a number of times until I realized what she was going through - even then, I was not always successful in being patient. Our mum had dementia for the last couple of years of her life after a fall when she broke her shoulder and suffered a minor concussion. My kids were much more patient with their grandma, than I was, but a lot of what came from me was due to fear and the loss of my mum who'd raised five of us on her own after our dad left.
All we can do is try to be our best; sometimes we aren't successful, but we keep trying.
22
This one hit very close to home.
Funny, you’re the one who wrote it, yet I feel the relief. Thank you!
30
wonderful. an inspiration to all.
15
Such a help, you very dear girls! Thanking you for sharing your thoughts and your hearts. Somehow in the midst of it all your mother understands.
20
The adults become children and the children become adults.
18
Touching and real. Thank you.
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Thanks!
7
You are an amazing mom who is raising a compassionate, loving daughter, just as your mother did with you. Never beat yourself up for the frustration of having to be Mom to your mom - we never expect that to happen to us, and you are doing your best. Never forget that you are a wonderful role model for your daughter, she has a right to know that it's OK to be sad, tired, frustrated, angry and stressed. When she sees you handle those feelings, it validates her own feelings. Sharing your journey with the rest of us is an act of courage and compassion. Thank you!
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I love this story..it's so real..
I had this passive aggressive relationship with my Mother too, and heaven knows, she had no dementia.She always made me feel guilty and I try so very hard not to do this myself with my sons. Not easy...
27
I can't fathom the purpose of this essay. To describe a family tragedy? What?
8
I suspect the point is to remind people to try to be patient with those who have dementia, for whatever reason. But I also find myself very sympathetic with the author and would remind her that it is human to be frustrated by a situation like this. Not bad, not evil, not cruel - just human. Most of us would handle such a situation with impatience and exasperation, too.
9
To describe the acute pain and frustration of witnessing your own mother's mental deterioration. I know this pain firsthand and, therefore, I'm grateful for this essay.
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I thought it was beautiful.
18
All the feels. I've been caring for my mom since I was 10 years old and she was in a debilitating car accident. I have had this exact experience so many time over the past 40 years. Thank you for sharing this beautiful piece of writing and so personal story. It is often a struggle to hold on to kindness after that 3rd or 5th phone call at the end of a long day.
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And sometimes we must set limits, even with those we love.
5 phone calls a day, short of a genuine emergency, is abuse.
Set a limit -- be it1 or 2 or 3 calls -- then use your phone or caller ID to screen the rest.
Sometimes, we are our own worst enemies in these situations -- feeling compelled to "do everything" but then being embittered because of it.
18
@concernedcitizen, sadly setting a limit does not work. i know from personal experience they will just keep calling. and calling. the phone not being answered will often just cause franticness on their part. and it still keeps ringing on our part. unplugging the phone doesn't work, because then *you* are cut off from everyone. it's sad, but there it is.
1
Could you unplug your home phone when you reach your limit but also get a cell phone to share with your friends, children, work etc. and not tell your mom?
Thank you for sharing. I understand how this feels. God bless you, your mother & daughter.
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When your daughter grows up and reads this she will feel it as a love letter from her mother. It’s lovely.
I wonder whether your mother’s passive-aggressive behavior pattern has roots deep down in her pre-brain-bleed days. The thought came to me because that phone game she plays is the relationship I had with my own mother (who was in in full possession of all her marbles). She would phone and stir me up, dropping implications like land mines, never asking about my life but telling me how fabulous everyone else was. When I would start to get angry, she would do some version of that “I was only calling to say hi” slapdown. So I was always the bad guy. I put it down to her being unhappy and needing to stick pins in someone. I’ve always been an easy target.
I mention all that personal stuff because I have seen this kind of prickliness in relatives with dementia. People who were once gracious, careful and kind become unfiltered, angry and mean. It makes me suspect that they always had that anger and resentment simmering beneath the surface. It makes me doubt the relationships I had with them when they were whole.
We can’t know what goes on in a damaged brain. All we can do is throw love at the chaos thrown at us.
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So why in the world assume the worst, that the bad stuff was always there? Why go there?
17
Dementia, for better or for worse, strips away the social barriers and the political correctness and often exposes whatever remains underneath the mask.
It would do Ms.Kendall-Dye and most posters here good if they contemplated that the fate of one's parents is often OUR OWN fate, a few years from now. Dementia and even strokes have a hereditary basis.
I can only pray that some of these folks don't see their own harsh judgments and cruelty boomerang back on themselves.....
8
Not true. Dementia does not remove some kind of filter and reveal the 'real' personality beneath. Your brain houses/determines one's personality. As the brain alters/decays, and especially in particular subsets of dementia the personality does indeed change.
For bonus points google 'Phineas Gage'.
Thank you for reminding me not to be a stupid , mean person when dealing with problem persons.
38
Thank you for this lovely piece. I too learn from listening to my grandson. Children give me hope for the world.
33
The language of love and of innocence conquers all. Perhaps if you dealt with your mother as you would your 5-year-old, entering a simple world of just being there and not expecting anything this would be easier.
28
uh... you didn't notice that that's what the whole beautiful column was about? and felt compelled to give useless, repetitive advice?
35
Mawick, I think that Ravenna was saying something different from what you understood...and shot back at. Ravenna is saying that the author should deal with her mother as she deals with her 5 year old daughter; not as her 5-year old daughter deals with the grandmother...Ravenna makes a good and useful point...and it is not what the column was about. p.s. I think the column also suggests that we should all simply be more kind, more patient....good advice for all of us...
40
Thank you for this wonderful piece of writing and its perfect timing: I am about to board a plane to fly across country to visit my mother, who also is in an assisted living facility with dementia -- and who is dying.
I admire you for both having written this and also for the model daughter that you seem to be... compared to how I have behaved in the past year of my mother's decline.
If only I could read a piece about how to deal with my guilt. In the meantime I will try to emulate both you and your child
112
No guilt. You do the best you can do. No one is perfect.
41
I have heard the screams of loneliness at a nursing home from a woman whose daughter lived across the country. We made ourselves go there, week after week, and endure the endless pain for years. Where was she? I listened to her mother's pain. She didn't.
5
As soon as the tears stop I'm sure I'll have something profound to say...
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Brought tears. Reminded me of a life low when I thought about the expression, "Two steps forward, one step back." When too depleted, all I could hear was the word BACK.
And that's both stupid math and unfair. Be kind to yourself. Your daughter's instincts are loving, expansive and kind. She's comforting you as much as her grandma. And it delights her to have this competence.
Kudos to all-a y'all. You really are doing the best you can. Hear: best.
51
Thank you for expressing these crazy feeling for all of us. You are not a bad person, lots of us out here in the same boat.
56
Thank you.
18
I have often said that 'adults should trade mothers'. That means that I am infinitely more patient with the foibles and passive aggression of YOUR mother, but not so with much my own.
This lack patience with our own mothers, even when not suffering such terrible dementia, comes from years and years of primal conflict and primal expectations of others and daughters.
I have met some of the worst mothers, those of my friends, but I have also seen that my friends turn into 'shrews or worse', with their own mothers. We are 'different' people, perhaps with each social interaction.
I rather imagine, Ms.Kendall Dye, that the 'best of intentions and lessons learned from your daughter' will fail to insulate you from the all too human angst of a failing mother. And the sorrow and fear because you no longer have anyone to ''mother" you.
Thank you for your marvelous 'share'.
52
It’s true that the tangled histories we have with our mothers can hinder our ability to deal with them as they decline. A grandchild knows and loves the grandparent as she exists now. No baggage.
33
Thank you for sharing such a personal story that totally resonated with me. You've reassured us that we can't always be perfect when taking care of our loved ones. My mother also suffered a stroke that changed her life in an instant. Once a gregarious, detail-oriented woman, she enjoys an afternoon movie but never remembers what she has seen by dinner time. Operating a TV remote or a telephone is very difficult- too many buttons. I also long for my children to remember the Grandma that they used to have.
22
This is a wonderful story that captures exquisitely a dilemma so many of us face. But not all is us could write so well about it. I agree heartily with your other commenters. Don't forget that you are a good daughter AND also a great mother.
43
It's so hard to be the child of a parent with dementia. Though my father had a relatively mild form of vascular dementia, combined with his harsh personality and almost lifelong antipathy for me, it was very difficult for me to deal with his tirades, like "I know what you are really are!."
But I, like you, made a decision to be available to my father in his latter years despite his hurtful behavior. I spent 3-6 months each year in my hometown in order to spend time with him. Though there were times I found it very difficult, plus one time when I had to suspend my visits to him for a week or so in order to care for myself, I am very glad I made the effort and persisted. In the long run, those last few years of his life were the best we had together, other than my early childhood.
19
I loved this. My father in law suffers from dementia and I've seen the same sweetness and acceptance from my 11 year old son in how he deals with his grandpa.
33
What a wonderful lesson to all of us. Thank you for letting us see how the sincerity of a 5 year old can change the world around us.
31
Just got in from visiting my dad who's in hospice at his assisted living facility. Won't tell how that went...I'm not sure I remember even, but I think the last 5 minutes of another 6-hour day there involved me snapping at a tired aide who barked orders at my dad, then demanded that I run out and purchase new pajamas for him immediately (it was 8 p.m.) so she could effectively grab the waistband as she hauls him out of bed in the morning. He's more or less fine, fine for being a dying guy, that is (dying of nothing dramatic, just old, old age...and all those scary things the author quite correctly notes). I was going to pour a generous glass of wine to unwind, but instead, read this piece and was rendered peaceful. I will reread it tomorrow morning before I go back to my dad's with new pajamas (and denture cream!) in hand. And again, tomorrow night. Thanks. Just what I--and he--needed. Astonishing--the healing power of good, honest writing.
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Rusty, it must be so very hard and you must be so tired. While a new pair of pajamas may help it would help even more, and be much safer, if the aide would use the various belts made to assist in these matters. The home should have these on hand. If they do not, you can purchase one or two, label them with a Sharpie, and insist that they be used. Pajamas, even with a waistband, are not made to be used in this manner. Aides are overworked and often poorly treated by their employers, but it is wrong for the aide to treat your father in this undignified manner.
47
Or good, honest living and loving.
1
Don't let those aides bully you. Sadly, they are so badly paid ... it's complicated. I've been lucky to find good ones and be able to reward them. It makes me so angry about all the immigrant hatred: they do work others don't want, but that's not excuse for them taking it out on you.
2
When I misbehave in front of my kids, once I’ve calmed down, I try to later point that out and talk about it. Why I did it, why it was wrong, what I can do to make up (if possible) for my behavior and how I could have handled it differently. Also, how I felt once I realized what I’d done. I try to avoid either defensiveness or self-recrimination.
If my kids (now adults) can’t always see me as a positive role model, they can at least get an object lesson. They see an example of someone being human. I’ve been pleased by the results.
I don’t always get this right, either, but at least I try.
52
Me too. When I get my head back together, I make a very clear point of apologizing and explaining how I was wrong, that it is not her fault, I screwed up, etc.. I own it, call myself out on it, and make it entirely clear that mistakes are inevitable -- we all make them. It is what you do NEXT that matters.
8
Just wanted to say that this was an absolutely wonderful piece. Thank you for sharing.
27
I really appreciate your unvarnished thoughts - the full mix of love, frustration, anger, fear.
There is such courage in your honesty.
Lovely piece.
27
Beautiful, honest and endearing. Thank you for sharing.
14
Thank you! I needed a reminder of humanity. You are a terrific mom and a stressed but loving daughter. Your child is a gift to the world. She will one day lead and teach many more of us.
36
What a beautiful, honest, funny and heart-rending piece of writing. You have done all of us a service by speaking what so often feels unspeakable, that we are at our wits' end and don't know how to deal with it or what to say. We don't all have a wonderful child who will engage with our loved one with dementia, so we must learn ourselves from your child. The only thing I found that works is talking about the past (if there is still memory from the earlier days) and singing.
74
Oh the beauty, magic, innocence and love of a child! Thank you for expressing it so well. Your family is blessed with angel dust :-)
14
My grandmother was 95 and had dementia when my mother visited her with my one year old. My grandmother didnt my seem to know much about what was going on and didn't really know who anybody was. But when my mom was engrossed in a discussion of my grandmothers medications with a nurse my grandmother interrupted them to say " I don't think the baby should be climbing up there" as my daughter had pulled herself up on a precariously high table. She seldom spoke so this was really unusual but I think that there is a strong deep-seated need to protect children that can be a " last skill to be lost" which is what the authors mom was really doing.
96
Years ago a wise coworker counseled me after a particularly frustrating parent-teacher conference: "assume that folks are doing the best they can." While they don't always work, his words come back to me often and help me remember compassion! You are doing just fine!
78
Oh!!!! How sad and lovely and wise. Thank you to the author for writing this, and thank you to NYT for devoting resources to this kind of piece.
157
Being a grandparent is a lot easier than being a parent.
14
Sweet. One of my favorite things about being a young parent (long ago) was that it gave me the humility to learn from my very young child.
20
Despite how frustrating and draining it is when a parent has dementia, I found it hard to feel sympathy reading of Ms. Dye's outburst towards a mother who can't help her condition. It was heartening to read the granddaughter extended patience and kindness and it was a teachable experience. We should remember (many of) our parents were there for us when we were helpless children, asking annoying questions repeatedly and not understanding communication. We may one day be the elderly parent with dementia and hopefully treated with gentleness and understanding by our loved ones.
7
So unfair. I'm all for compassion, but it seems to me there is only so much pain that even damaged people should be allowed to inflict onto others. And by the way, decades long, soul draining caring-giving of a mentally unstable parent can't begin to compare to the care they may have given to their own children. "Being there" for the helpless children we create is what we sign up for when we decide to become parents. I'm grateful to the author for honestly sharing her experience.
24
No sympathy? You obviously do not have to deal with someone with dementia then.
10
Really? Thanks for assuming that all experiences are the same. Personally, I was NOT cared for by a kind mother as a helpless child. I had a sadistic, narcissistic, crazy, nasty witch. And I left my home country, and now that the witch is old, I will not be there, thank heavens.
8
Yes, you probably do bad things but are not a bad person. Just remember that into every life falls some random misfortune- yet you can still be happy. Your mother is alive and these moments are so much better than your daughter never knowing her grandmother at all.
36
Beautifully expressed. Thank you.
68
Thank you for sharing this.
44
Absolutely...
The not remembering -- the nearly deaf. we are often somewhat rude but forgive yourself.. and PS it's not nice of mom to guilt-trip you.
Try putting the phone on speaker and going about your business saying OK every so often.. You don't have to listen or listen w/ one ear.
Or have your daughter who sounds charming answer the phone.
38
Beautiful.
17
What a lovely piece. Don't kick yourself too hard; you're child learned those skills somewhere.
256
Lovely.
14
What a gorgeous piece. Thank you.
28
To use a Southern expression: bless your heart. I’m delighted you had this moment. Hold on to it. Dealing with a person with dementia is unbelievably hard. Hang in there. Lovely story.
136
Please be kind to yourself. I can tell you are a more than a good person. Remember you taught your daughter how to be compassionate and then she showed you that she had learned despite your little lapse. I’ve been there and I find after so many years of berating myself after a lapse that I am holding on to those mistakes rather than accepting what everyone who knows me says. I was kind to my Mom. I was a good daughter Be patient with yourself. We are all only human.
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