I feel for this woman's daughter, who hasn't been addressed much in the article or the comments. If this girl's mother had died ten years ago, she would have grieved and then recovered and been able to live her life. Instead, her grief never ends. Seeing her mother in this state year after year must surely be taking a tremendous psychological toll on this girl.
When I fell and needed knee surgery a year ago, I told my ex-husband that if something went wrong with the anestheia and I was in a vegetative state, I did not want to be kept alive. I have two sons, and I believe it would be much better for them if I died -- although I know that would be hard -- than if they were forced to deal with me artificially kept alive in a horrible state of not-really-alive.
1
the patient's life has meaning because her sisters and daughters are able to express and experience their profound love for her. what else would make a life meaningful?
2
Instead of the stock photo used for this article that shows a peaceful setting of a person lovingly holding an elderly person's hand, perhaps it would have been more enlightening to show a photo of a person holding onto a contracted withered limb. If a video was included of a person in a similar vegetative state as the woman in the article, then people would have a realistic vision of this woman's existence for the last 10 years. Then we could have an informed discussion about it. Such a picture or video would be unpleasant and disturbing for sure, but this is an unpleasant topic. Difficult decisions need to debated with our eyes wide open to all the unpleasant realities associated with it.
2
This is the saddest story I have ever read. The patient is obviously no longer present, but the sisters cling to her in their need to defy death. Can you imagine keeping your unconscious pet around for twenty years?
3
A friend, with her RN-BSN, a hospice nurse, is her mother’s POA. Her mother is a devout Christian. In addition to my friend, this elderly woman has five sons. The sons routinely demanded to “keep mom alive at any cost.”
Mom, 93, is in rapidly failing health — she told her nurse daughter, “I cannot go against God’s will, so if I ever need life support, you must honor that.”
My friend said, “Mom, if you ever require life support equipment, tubes, interventions etc. to be kept alive, THAT is going against God’s will because without the aid of that life support you would die a natural death most likely within hours, if not minutes.”
Her mother exclaimed, “No one every explained it that way. Let’s get that in writing. I do NOT ever want life support at my age — that would be interfering with God’s plan.”
6
As a hospital chaplain, I ascribe to the notion that we are all creatures equally created, mind, body and spirit. When I encounter a person so tethered to their corporal being, I am saddened, and reminded of the words of one of the many excellent clinicians I know. In caring for a patient similarly disabled, whose daughter was making the medical decisions on the patient's behalf, this physician mused 'who is the patient in this room?' So I would ask this family, for whom do you keep your beloved here?
4
I think the state and medical profession should also intervene and not provide the means for a continued and exorbitantly expensive vegetative state. One irony of the situation is the law only allowing discontinuation of feeding and hydration but forbidding a remedy such as a Fentanyl injection could supply. So in the warped legal mind, the person feels no pain or discomfort all these years and to make that absolutely the indisputable truth, they forbid a pain free exit.
5
Even though these sisters are more attentive than most families of a comatose patient, they have, never the less “ deligated” (dumped) the day to day care of their family member onto others. Nursing home staff are poorly paid for tasks many of us find unpleasant, teadious, and thankless. As well as back breaking. The cost overruns f this patient’s care is also borne by either insurance or more likely Medicaid and not her family. All of those factors bear consideration as we contemplate (hopefully) single payer government sponsored healthcare in the future. We will be forced to make choices just as the UK has done recently in the case of Charlie Gard.
5
I read this article five or six hours ago and The thing that sticks with me, is the fact that this patients doctors accused her of not complying with treatment only to find a serious condition in light of of her extreme weight loss, diarrhea etc. This issue of the doctors dismissing their patient’s complaints, observations and ideas around their own health simply must be addressed.
2
Reading the comments, I note that everyone is judging these sisters by their own standards. I would not choose what they have chosen; I would not do what they are doing. But if their beliefs tell them they are doing what is right, I would not step in to violate their decisions.
3
@Blonde Guy
I’ve been following these interesting responses for three days. Rather than blame others here for “judging”, or trying to “violate anyone’s decisions”, you might want to read the reactions again more carefully. Try seeing these responses from another perspective....commenters are simply reflecting on their own thoughts & feelings re. a vitally important subject that is of very real and serious consequence to all of us.
This subject is important, not only individually (re. need for DNR if you so desire), but also the impact on family and very critically, the financial drain on society. The cost to keep someone without any quality of life on life support is increasing exponentially and impacts all of us as tax payers (unless the family are extremely wealthy, Medicaid pays for this, and WE, as tax payers pay for Medicaid). Everyone of us has an OBLIGATION to be fiscally responsible,...No matter how much money you do or do not have or make!
Another extremely important concern is for nursing care or manpower...who is going to take care of “warehousing” all of these souls?
5
It's fairly clear that the patient is not intellectually sentient. Her body is responding to the nourishment being streamlined into it. This is 'being kept alive'-- it is not a life.
11
In this situation it might have been useful to call the hospital's chaplain(s). They could provide trained pastoral care for the sisters and daughter, checking to see how they were coping, and letting them express any feelings about their situation in a non-judgmental environment.
3
Is this in the best interests of the patient? Is this what the patient would have wanted.
Multiply this patient by tens or hundreds or thousands in possibly similar situations.
No chance for recovery, vegetative state and how many millions of public funds that could be put to better use.
Tough call for family? Life sometimes requires tough decisions.
The family's commitment is touching, but it should not be about the family.
13
I just wonder if their decision would’ve been the same if they were paying the bill.
As a retired physician, I have seen similar family members randomly decide that their totally wiped out relative would walk soon and regain all of their strength and have lunch in a nice restaurant with them. But the only problem wais that every organ in their system was shutting down. And it was costing Medicare roughly 20 to 25 Thousand dollars a day for this parody to continue.
I think if there’s any kind of a meaningful chance for restored vitality, yes we should do it. But in cases like this, if the family can afford to pay that kind of money then fine they bought a wonderful piece of whatever. But if not, the taxpayers should not be saddled with this.
22
I think it’s impossible to understand decisions to sustain a life under these circumstances unless you’ve been through this. I’ve implored my husband and kids to pull the plug on me if the choice is vegetative state and dependent on life support vs. death.
My first reaction though was organ donation and how many waitlisted transplant patients miss out in situations like this but are organs still viable when someone has been on life support for so long? That would be a nice outcome to this story.
I feel really callous for saying that...
7
All I can say is ignorance is bliss.
9
After reading this article, I immediately wrote to my two sisters to make sure they were aware that I have no desire to persist in a vegetative state, if such an unfortunate event were to ever occur to me.
While the sisters’ devotion to their comatose sister is certainly admirable, personally I believe there is no point in continuing to live when all the behaviors that define my humanity will never again be expressed or experienced by me.
29
The 53 year old woman died tragically ten years ago was Lovingly cared for and never alone. My hope is that everyone has someone so devoted.
It is so disappointing that the family did not use the change of the feeding tube to allow her to go in peace without further intervention... but even after ten years this family could not allow that. I find that incredibly sad, naive and selfish. The resources devoted to the woman should be spent elsewhere. Ten years is a prison sentence and now she may spend another ten in continued purgatory.
30
I am with those who say this family refuses to accept their sister's death. It is a macabre situation at the very least.
No family values are represented here but selfishness. Selfish to expect others to be the 24 hours a day caregivers of a basically lifeless shell of a person.
Then there is no doubt the selfish use of the public funds which pay for this.
Someone should confront these women with the funds they are robbing from others who might give birth safely to new life, who could be healed up for a productive life, and who need those funds desperately.
They must let her go...
19
What if she wakes up? What if there is an advancement in neuroscience in 2023 and she recovers, but in an amnesiac state? Maybe that woman is so special and loved that the costs of her care are worth it on the chance that there may be hope someday.
3
@ann and what if there’s world peace tomorrow?
11
Very sad case but she is being kept alive because her family cannot let go!
13
How is this love?
This woman exists, but she is not alive.
Keeping her in this state is akin to arguing with gravity. It is selfish, immature and a waste of precious resources. All the lotion in the world will not rub away the fact that all people die and this woman died 10 years ago.
Give her peace and dignity instead of another feeding tube. Let her live forever in their warmest memories, the treasure trove of family photos and shared wisdoms.
34
Wow, I so disagree. Proobably the sisters are lovely people. But that does not make what they are doing righ
13
I would hope that somebody would allow me to die in this situation. I would find it infinitely frustrating to be a vegetable. If I had any consciousness at all I imagine it would be something that looks like the Scream.
10 years is a long long time. That just sounds so painful to exist like that.
16
Everyone who would not choose to live like this should have an advanced care directive. Do it for your loved ones as well as yourself.
16
@ca Even with an advanced directive, your wishes can be ignored by the medical staff. You need a proxy who will show up in person and be a strong advocate. If your proxy happens to be traveling in Thailand, or you don't have kids with the right stuff, you're out of luck. The docs will continue to treat you because they can keep charging money.
What we need is a way to set up directives online and maybe have a a bracelet or tattoo with the URL. Or just a bracelet or tattoo with DNR and NO CPR and make it binding. And everyone 70 and over should get a cyanide pill, to use as desired, with no shrinks and no hoops to jump through.
3
Doctors too often feel that we are all wards of the state and they have the right to make decisions for us because they know best. How dare anyone make any medical decision for someone else and their family? Especially a life or death decision! This isn’t a Nazi dictatorship where some lab coat gets to decide another persons fate. If a family so chooses to undergo the years of cost and time commitment to care for their loved one, they should have the opportunity. It is refreshing to read an article by a doctor who has maintained some sense of an open heart.
4
Thank you NYT for calling Dr Ouyang an “emergency physician” and not an “Emergency Room Doctor”. I’m hopeful the Times continues to address emergency physicians correctly.
5
if the family had to pay for the care, would the decision remain the same? i am likely to be paying for it with my premiums and taxes. i strongly object!
31
I hope this patient's family doesn't read this article or the comments. It would only make a hard thing worse, particularly the comments and particularly for the young daughter.
2
Why? They live this life. They surely know their choice was a surprise to medical teams at the time and since. And they surely have had many, many discussions with caregivers over the years. My guess is that these have offered an opportunity for them to testify to their profound love for their sister, devastated as her brain is, and their profound regard for life. And my guess is that they have felt deeply honored by many, not just Dr. Ouyang, who are clear that they would make different choices.
7
@dlb Perhaps it will give the daughter cause to ask herself if she entirely agrees with her aunts or if she is partly just obeying authority figures. There will come a time that the aunts are gone or no longer able to participate intensively, and decisions will fall to her. She may not -yet- be able to see herself challenging them.
5
22 years ago my mother had heart surgery from which she had difficulty recovering. While she was in the hospital she did a DNR/DNI order. Despite that, when her heart stopped she was painfully resuscitated in the early morning hours . I came to see her that morning and shared her anger that the DNR had been ignored. I promised her then, as I had for years, that if she ever could not recover the quality of life she wanted, I would help her. She died a few days later, so I was not held to that promise. I’ve made sure there are people who will honor such a promise to me, if I ever need them.
24
I cannot fault this family for their devotion, and I assume that they are sharing the same views as their sister who has spent 10 years brain-dead and in a coma. But I think it is paramount to honor the wishes of your family member as directed. My elderly father wrote to me and my sisters several years ago to inform us that he has made arrangements, when the time comes, to donate his body to a medical school, rather than have a funeral. He wrote that he hoped we won't intervene to stop this.
Of course we will honor his wishes -- it seems churlish not to respect someone's decision about their own end.
9
@Mary Owens She is NOT brain dead!
Many people cannot foresee what medical situations can arise. Hence they cannot give informed directions how the family should proceed if they should become comatose.
But of course your father's wishes should be honored. They are bery specific.
1
My take away from this emotional story is my wish to have family members who would and could dedicate themselves so lovingly if I were 100% dependent on others.
I'm not so sure I would allow them to do so, but it is very touching story and certainly a rarity. Perhaps they consider it a honor to be there for their sister.
I don't know, we'll never know. The only thing I do know is that they chose to keep their sister alive knowing the ramifications of her condition. They continually show up for her and I am moved by their love.
I don't know if their sister can hear them speak or sense their touch or presence.
I simply cannot judge these people never having been in this tragically sad situation.
10
I believe that every person is entitled to die in their time; that no one has the right to intercede on that timetable.
And I was genuinely moved by the devotion of this family. It is so rare and beautiful.
But I ended up wondering...in cases such as this, are we "keeping them alive" (artificially) for THEM or for US? In our heart of hearts, I fear we must admit it is the later...
24
@Marty I think you're probably right. However, if the patient had views similar to those of her family, they apparently made the right decision for her.
8
My older sister suffered a massive heart attack , and was resuscitated although she had a DNR ; she was in an ambulance a distance from the city she was being transported to . She too had no meaningful neurological recovery . She was also a nurse and knew what it would be like and had chosen me to have her durable power of attorney . She made me promise I would honor her wishes . In spite of knowing what she wanted , it was a difficult decision for me but I honored her wish . Losing her was like losing a second mother . I remembered how she took care of us , babysitting me and my younger brother ; she was ten years older and in high school when I entered grade school and a lioness when defending us . I deeply mourned her going and doubted my decision until her friend who knew what I was going thru , confided to me that my sister had told her that I was the strong one in the family and would honor her wishes . It is never clear cut and families follow their hearts and decide. but in my case , my word was my bond and I honored her and the confidence she had in me . I still miss her and think of her .
79
This situation raises the question of how long a code should go on. Because if someone CAN be resuscitated, at least from a cardiovascular perspective, they will be. If we decide that biological life is the greatest good, then we get this kind of situation, in which a a living but non-sentient being is cared for, as one other writer said, as a shrine. If we want to avoid this situation, and I concur with those who assert that we should want to avoid it, then maybe a 20 minute code without an independent heartbeat is too long and we in Medicine need to reevaluate how resuscitation efforts are ordered and sustained.
30
Financial costs of care in our medical industrial complex MUST be mentioned as they are staggering and increasing exponentially with each passing decade.
When will we address this issue and where will we get the manpower to warehouse and care for all these people?
30
As a practicing neurologist, I've lived this nightmare as a physician. As a family member of a parent who suffered this fate, I've seen it from the other side. The acute resuscitation event presents no options--care is provided and the outcome is uncertain. Once the dust settles, it is unreasonable to expect families to make life or death decisions and for medicine to simply follow them (usually with doctors offering a smug complaint of "the family wanted it so what choice did we have?"). The family has never experienced this tragedy before. They have not seen patients trapped in a minimally conscious or vegetative state for years or decades. To them, the family member looks like they are sleeping, waiting to recover. Money and resources are not the issue. Physicians and society have abdicated their responsibility to guide families in crisis. As a society, we must decide whether or not we are willing to provide care that sustains physiology without consciousness. Just because we can does not mean we should. Providing care that sustains suffering violates the primary guide of medicine....primum non nocere.
73
When my dad was placed on life support my brother and I had absolutely no idea what to do. No one would provide us with any meaningful guidance, and at one point my brother said, “What are they going to tell us, it’s the doctor’s job to keep him alive.” We would have been so relieved if his doctor would have been more forthcoming with us. After we turned off life support multiple nurses told us we did the right thing. I wish we’d had more help getting there.
40
For one long moment, try to imagine yourself as this tragic woman....lying there in that bed day after day, month after month, year after year, totally helpless, unable to do a SINGLE thing for yourself, You can’t even scratch an itch....with no quality of life. It is a mere existence, NO QUALITY....for 10 years.
It may soothe those who love her, but WOULD YOU personally, EVER CHOOSE THIS FOR YOURSELF????
63
@Kathy...Retired RN
And yet, here it is. The author, a practiciong medical professional, concludes that the family had made right decision torturing and exploiting their sister for their emotional needs. What a poorly thought over statement!
I've been working in a nursing home for a while already and I find it sad that people without a capability to end their suffering by themselves are subjects to money making business of LTC facilities. They are kept alive with feeding tubes, they receive physical and occupational therapy that is pointless as they cannot participate. They are reduced to being commodities the LTC industry feeds off. I can't imagine the worst cruelty than to subject a person who has no capability to speak for herself, who has severe brain damage and irreversible muscle atrophy to decades of being in that state for family's emotional comfort.
What is right about it in the author's mind is beyond me.
13
The poor woman has become a living shrine.
29
If the cost of caring for a loved one in a persistent vegetative state was coming out out of the relatives pocket, how long would your loved one live?
34
@Solamente Una Voz
I don't know, one, two days, maybe a week. I tell my kids, just kill me. Nobody should be made to suffer like this and put their families through it.
9
@Solamente Una Voz What if I want my taxes to go to her instead of to a multi-generation welfare family? What if I think this is a better case than a drug abuser or pregnant teen? If I don’t get to pick to not pay for those people, no one gets to not pick to pay for this woman.
Why are there so many assumptions that the fact that this is a Spanish speaking patient means she is on Medicaid?
1
@Ed, I don't think it's to do with speaking Spanish. I think it's the information that she's been in this condition for 10 years. Most patients, unless very wealthy, will have exhausted their means long before that, amd Medicaid is the next step. It is not realistic to imagine the family can pay thousands a month for her care, indefinitely.
29
Only the wealthy have the means to stay in a nursing home for very long before exhausting their means. A similar situation occurred at my Mom- in-laws CCRC- which is 100% self pay always- the daughter of a resident who had Alzheimer’s disease came every day to spend all day with her Mom ( hired nursing aide at night) for several years. This family was also Hispanic but very wealthy. I visit my Mom 3-4 times a week at her Assisted Living facility but it would be hard to do it every day.
1
It has nothing to do with her speaking Spanish Almost all long term nursing home patients are on Medicaid
9
No amount of vitamin e lotion or loving touches would make me wish to live a “life” like the patient described here.
48
Of course the got their way, but with the costs of this kind of care, I assume we taxpayers are paying for their self-indulgence.
12
Helen you are deluding yourself. Loving siblings do not prevent irrational, selfish decisions. I have been in this situation and I made chose what was best for my brother, not for me.
18
Have you read The Spirit Hits you And You Fall Down by Anne Fadiman? It presents a portrait of failed medical intervention and a family's determination to maintain love and attention toward a severely compromised young girl. Clearly the only decision for that family. A compelling read.
9
>When it happened, her brain was deprived of oxygen for 20 minutes; heroic efforts thrust her back to life.
Why are such efforts heroic when it's beyond obvious there's no chance of neurological recovery?
41
These are difficult decisions but this family are a perfect example of healthcare in America.
Their personnel decisions failed to address the quality of life for the patient, which in this case is none. A body that was not allowed to die with grace and dignity.
The final problem is the financial cost to our society to pay for the healthcare of this individual with no difference in outcome.
What exactly is learned, the author believes is a wonderful family? This is total nonsense.
15
If it was one of my children, I can tell you that I would be the one who would come every day... I am not sure i could let one of them go
If it were me - yes i would beg - please let me go...
11
“For this family, it didn’t really matter at all what I thought. Sometimes we as doctors forget that.”
Sometimes doctors have to stick to what is ethical and not allow for religious zealots to cling hopelessly to the husk of a loved one based on some ridiculous false hope that someone is still present in a slab of meat afflicted with brain death.
One would think that this kind of behavior would qualify as doing harm on some level.
21
Would this family be so adamant about keeping that woman hooked up to machines if they were personally liable for the medical bills? I don’t think so.
20
Wow. I thought I would read the comments expecting to find a balance of good thing/bad thing, but overwhelmingly (perhaps unanimously) the comments paint the family as folks who've make a "wrong" decision, while a few have commented that the mom would have definitely NOT wanted to have been kept alive. As someone facing this decision imminently, I can't applaud this family more, it sounds like they're "walking the walk", providing for 10 years continued love and affection towards their mother. Even by their own admission it's not clear that she perceives them, and even if at times she's experiencing discomfort. But at the same time I don't believe anyone (especially us readers) can claim that there haven't been times that prolonging the mom's life has not been rewarding or gratifying for mom or the children; we simply don't have a way to conclusively know. As a physician who's practiced in an era that's seen the emergence of hospice care and the "right to die" movement, I personally lean towards endorsing palliative care and comfort measures when patients and families have a definition of what constitutes, "a life worth living". But that's definitely not all patients and families, and for families such as the one depicted in this article, I applaud Dr. Ouyang's observations on what some, including me, view as loving unconditionally, for better or worse.
10
@Medhat
The patient is being cared for by her sisters. Read the title of the article, please!
1
@Sharon Salzberg She lives in a nursing home. One sister visits twice a day, the other monthly. The state is paying for her care.
I thank God every day that, when my father was in a not dissimilar state as a result of septic shock, our small family was in complete agreement about what he would want. We lovingly removed extraordinary care and let him die, rather than never be able to sit up, have a conversation, enjoy a meal or a visit from a friend. I also thank God for the doctor who encouraged us to think about what he would want, how he lived, what decision we could live with and what we needed to be comfortable with that decision. I feel sorrow for this family whose lives so revolve around the shell of a woman who died long ago that they can't move on.
52
If we take a poll of Americans, how many would say they would want to be kept alive in vegetative states where the doctors say there is no hope for recovery? Lets have that answer be the default in cases like this unless the patient has issued a directive to use heroic efforts. That is the humane thing.
28
@Ms B I would want to free my family from the burden.
14
Slightly off-topic but I was glad to read that you looked at the patient's medical record before entering the room. I hate it when the doctor walks in and ignores me at the beginning because he or she is looking at a screen before interacting with the patient.
22
While I disagree with keeping a husk of a person alive like this, it is disturbing that the financial costs are even mentioned. We live in a sick society in which the rich are given a free pass on taxes while the rest of us fret over the costs of medical treatment.
As far as keeping this body alive, if someone did this to a dog it would be considered sick animal abuse.
24
It’s equally disturbing when costs are never mentioned.
11
Gently, the use of possessive pronouns by physicians is both directly related to theme of your essay and always grossly inappropriate, the latter a reflection of the narcissism inherent in the practice of western medicine. People are not objects to be owned, even those without normal neurological function.
On the other hand, family is the social institution in which we declare our emotional attachment and kinship. Members of a family belong to each other, while the role of 'patient' is both an economic assignation in a profit-making endeavor and a diminutive role created by the industry of medicine to infantilize and marginalize the consumer as less than a full consumer and less than fully human. The ironies and metaphors in this essay abound.
For the most of us most of the time, the role of 'patient' is passing diminution and humiliation in an otherwise autonomous existence. Please quit talking about your fully human equals like you own them.
3
The sisters made the right decisions for themselves. Whether they made the right decision for your patient, who knows?
8
Yes, a very caring family. But who are they caring about? In my opinion they are caring more about themselves and not what would have been in their sister's best interests. Their inability to deal with her death has led them to revive her after her death and not be able to let her go. Because she did die and remained dead for 20 mins. They love her but they have not done what was in HER best interests. They have let their love allow them to do what was in THEIR best interests, which was life above all else.
I have worked in a hospital for over 40 years and there is one thing I have come to know is true, there are many things worse than death. A contracted body without a functioning brain, drooling with a feeding tube because the lack of a brain does not allow them to swallow, is not a life worth living. Because of their devotion all those healthcare dollars were wasted for decades. Her daughter is still revolving her life around a body which WAS her mother but no longer can see her. Because we can is not a reason we should.
64
@georgiadem
Bravo! Well said!!
14
intensive care with no chance of improvement, and people living on the streets -- where the money goes, where the money comes from
13
The family did what was "right" for them but not for the patient. She is undoubtedly suffering. I'm glad they are not my family.
34
One can only hope that she is completely unaware of everything around her
For every Family like this, there are fifty that rarely visit. No blame, people have lives, work, children. Families that refuse to pull the plug, OR refuse to admit the obvious, are the real problem. They should be taken on a tour of a long term
“ facility” for patients on ventilators and in comatose or severely brain damaged states. And, I’ll say it. WHO is paying for the TEN YEARS of this Woman’s Care ??? Most assuredly, we Taxpayers. The money would be much better spent, invested, in care for pregnant Women and for Children to receive basic care, immunizations, FOOD, etc.. You decide. We can’t afford everything, because the Rich must always have MORE Tax Cuts.
42
My, aren't you the compassionate one.
6
@Blue Jay
No, I’m the realistic one. When one of my Dogs or cats are terminally ill, I euthanize them. It’s the humane thing to do, and prevents unnecessary suffering. That’s REAL compassion.
2
@Phyliss Dalmatian
"You decide." No, her family decides, not us. Shame on you thinking you have a right to decide who's life is more worthy. When the death panels start recruiting you should step right up. The question you should be asking is why we can't have both not either or. And I don't mean tax cuts.
2
I'm sorry if this offends anyone, but I read this as something of a horror story. This woman has been kept "alive" (perhaps preserved would be a better word) for no reason other than to meet the emotional needs of her sisters. She has become the family fetish. This is not love - it's selfishness. And I say this as someone who has had to make the heartbreaking decision to withhold further treatment and allow the love of my life die. I regretted the situation, but I never regretted the decision.
87
My first thought was if the patient herself ever expressed any opinions about being on life support.
4
The question must be asked: Who is this woman being kept alive for? Herself, or her family? I can't imagine anything worse than to be imprisoned in your own body in order to satisfy the needs or convictions--or even the love--of your family.
39
An issue you did not take into-account in your discussion is that all your arguments are based on the people who are not in a vegetative state. If you did, perhaps, you could have discussed the problem of fear of the own sisters's mortality, of their guiltiness of not being her and/or their own selfishness in denying her sisters's state. What I see in your descriptions of how the sisters "took care" of the-not-anymore meaningful sister's life--is in the way they 'care"about her: literally as an "object." To deny the dignity of ending life when "life" is not there anymore, borders in creepiness:it has nothing to do with a humane or respectful approach to the "feelings" of those involved in manipulating just a boy.
15
I have seen too many patients become physiology experiments. Somebody has to be the responsible adult. When this woman's heart stopped and she had cerebral anoxia, it was her time to go.
We wouldn't do this to a beloved pet, why would we do it to a person? Keeping this person's body alive is not for her benefit, it is for the selfish benefit of others who don't want to feel guilty about letting her go.
34
Wonder who’s paying the medical bills. Probably Medicare. This issue affects all of us and our taxes. What is a life worth? If they’re (the patients) not sentient for decades, there’s something wrong with the picture.
13
No one ever really knows in life-and-death matters whether they’ve made the “right” decision. We use the expression “to be at peace with” a decision in lieu.
4
There is a delicate balance between individualized care and shared resources. Keeping a loved one on life support in an ICU at $3000/day + MD fees under any insurance policy will cost shift or reduce benefits to others.
Perhaps there can be self-pay step down units where families can sustain loved ones in vegetative comas for a decade or maybe there can be longterm care policies that kick in when depleting everyone else's resources makes insistence on ventilators & tube feeding defy reason or compassion.
That said-- it is difficult to say when is long enough to give a patient a chance to make a miraculous recovery. Three weeks ?
Three months ? Brain dead for 3 years ?
9
I cannot stress enough the importance of having your end of life wishes documented and communicated to your family. And do it early in your life and be very clear what you want. A living will is important but having your loved ones truly understand your instructions is vital. Talk openly about organ donation, feeding tubes, ventilators, CPR and mention your instructions every year like you change your smoke alarm batteries. Your health and ability to communicate can change in a second, don’t wait.
30
The sisters made the right decision for themselves. They have created a narrative of themselves as loving care-givers, twice a day for one, twice a month for the other. An minute amount of time in the existence of the sister who, they think, may not be in pain. But they can't be sure. On some level there may be discomfort, unease, an itch that can't be scratched. What a sad and not uncommon story..
22
@winchestereast
I don't think she's in discomfort. It's both not so bad as that, and worse. She feels nothing, she's not there. She died years ago.
4
When a family is deeply invested and personally involved in the care of vegetative complex-care patients like this, it is usually a relief for the care team --it is the exception rather than the rule. However, cases like these are like a salve that ease and mask the underlying ethical and moral issues without offering meaningful resolution or insight. The limits of medicine is something that our society needs to have a frank discussion about, absent TV programs and documentaries powered by magical thinking. This has particularly caught the imagination of immigrants from the developing world, and it doesn't surprise me that the patient family is Spanish-speaking. A recent study at the university of Toronto confirmed what many of us ICU providers observed, that foreign-born patients were more likely to die in an ICU than native born (the implication being that they recieved more escalation to "heroic" treatment despite possibly poor prognoses) http://www.dlsph.utoronto.ca/2017/10/recent-immigrants-more-likely-to-re.... Native born and white families are likely to be more measured about the ability of medical sciences to enact miraculous cures and more concerned about comfort and quality of life. Certainly everyone in our society needs to be confronted with a frank discussion of
end of life issues. just because something can be done doesn't mean it ought to.
13
My siblings agreed with one another to keep my mother on "life support" for a year, after she went into respiratory failure, despite doctors' assurances she would never 'get better.' She opened her eyes when someone awoke her, and maybe even smiled, but she didn't have the energy to do anything more. Machines to make her lungs breath, and feeding tubes. She couldn't tolerate having the tv or radio on, a woman who always stayed up-to-date with world news, and loved all kinds of music.
My sister had the power to make medical decisions. Her interpretation of our mother's end-of-life wishes, were different than my interpretation, and from the interpretation of the rabbi she consulted.
My sister visited with our mother several times per week, and insisted all the rest of us do the same - we didn't. My sister did not have to work to support herself
14
@SJWwas she kept alive for a year? Who paid for her care
1
We don't know the patient's wishes, but if she has loving sisters, I venture to say they would probably come closest to knowing her thoughts.
If we wish, as a society, to honor the wishes of people who choose NOT to end their lives like this, we are equally honor-bound to honor the wishes of those who do.
This patient's life is absolutely NOT what I would want, but I respect and admire her sisters for their choices and sacrifice.
12
No, I wouldn't keep a family member alive like this, nor do I want anything like this for myself - even if I had such dedicated family. But that doesn't diminish my awe for their devotion. What I would love is insight into their feelings and thoughts over the years: how would they see letting her go - since that is essentially what this is about, not applying extraordinary measures, just removing that feeding tube. Does this have something to do with the daughter's coming of age?
when I was young I had contact with a family with a profoundly retarded child: I met her when she was about 12: she had been only slightly better off than this woman for her entire life - minimal signs of awareness. They had been offered nursing home care but refused: my supervisor helped me to get clear of my own prejudices, and to appreciate that this care was something tie family had to do for itself. She was so fragile that she would likely have quickly died in any place where her care wasn't as loving. She did die before age 14, but the family members knew they had done everything possible to give her what comfort was possible. Devotion.
7
I read this story as the inverse - as a shirking of responsibility by the family.
Once you prevent nature from taking its course you take on the responsibility. Care and compassion caused that tube to be inserted with a proper desire to save the life that existed. However, when that attempt failed, it became their responsibility to order its removal in a timely manner. That tube should have been removed years ago, and the process that nature (or God) started should be allowed to complete.
45
This is why it's important for all adults to have documentation of what they want if they're in this situation, and to have discussions with family and doctors about that.
I am very curious whether the patient had done this and what her desires were.
6
perhaps the patient's being is to teach us compassion. when we are all CRIPR perfect beings we will certainly lose compassion. there's a lesson in there for us, even those of us who might choose a different path.
2
Just a few thoughts, sans judgment:
Yes, the decisions these sisters made, and their ongoing relationship with their possibly insensate sister, are likely based in their (I assume Christian) religious faith and family-rooted culture. I admire them for their dedication and compassion.
In this loving service to another, fully needy person, the givers gain something as well. There exists, in this loop, a danger of codependency. Something to look out for if you are in that situation, because it can cloud perspective.
I would urge medical and nursing home staff to remember that family visits can diminish for many reasons. Among those reasons may be a lack of positive connection in earlier life. If a parent was abusive or neglectful toward a child, for instance, it’s a lot to expect of that adult child to lavish care on his or her declining parent. Many do it anyway, to heal themselves and to do what they see as the right thing. For some the contact is simply too painful. Please don’t judge them. You don’t know what people have lived through.
27
Dr. Ouyang, it may be that this patient's family made the right decision for themselves, but not for the patient herself. It seems to me their decision may have been made at her expense.
80
Poignant well written story. I can understand how she thinks her opinion of what should matter is Leah important than those of the family. But even more important is the patient herself who,the doctor describes as who “would never walk, talk, eat, Hu for kiss. She’s would never interact with the world around her, never understand anything again.” Her limbs have contacted and are wasted from the disease. Yet for 10 years she’ s been kept alive with life support, thanks to her sisters’ wishes.
Although they may mean well, unfortunately what they did sounds misguided and terribly cruel. Why would they choose to inflict this type of “life” on anyone, let alone someone they profess to love. It sounds to me like torture and not what almost anyone would choose for themselves. I wish the writer would have at least considered what the patient’s wishes might have been before condoning the sisters’ decision.
47
I am not so concerned about who pays for all of this, as the effect of the no quality of life this patient has.
The focus shouldn't be on the patient's sisters, or her child.
The focus should be on the patient.
She has zero quality of life.
I am sure the sisters care of the patient helps them sleep better at night, after all, they didn't make the tough or courageous decision that this patient needs.
It is a sad story, with no heroes.
89
Well written article. Thank you for sharing.
I wish I had family members like this to support me
2
Grief is a terrible and powerful emotion. And it makes us do things that are in hindsight not in another's best interest. While I understand that overwhelming love and hope made the decision to keep this woman on life support 10 years ago it stopped the grief process in its tracks. I do wish the medical profession had a better way of dealing with this. A team of professionals working with a therapist and the family to determine the best course, a realistic discussion of the inevitable outcome. And to revisit the topic on a recurring basis rather than the one and done shrug. And yes, a frank discussion of the costs should occur. We have a finite amount of healthcare $$ and Medicaid spends 50% of it's money on 5% of patients like this woman. We need to have a discussion of how long to keep someone minimally "alive" when there is no hope.
55
I wondered, as I read this article, who is paying for all this care the doctor's patient needed? There are people right now who could lead relatively normal lives, but lack access to timely medical care and either die or suffer serious adverse consequences. For others, something small can make a huge difference: eyeglasses to see clearly, a visit to the dentist to relieve pain or improve the ability to eat, access to physical therapy, the list is long. What is the right balance in the allocation of ever increasing scarce medical care resources, and what right does a patient or a family have to use large portions of them for what is a very, very limited existence? Especially when others go wanting.
98
Several have pointed out the costs associated with this type of care. If Bill Gates wants to pay for a loved one to be cared for in this way, so be it. But when public dollars are used, it is correct to consider points of view besides the families as these decisions drag out for years and years. Opportunity costs in these situations are very real. Even if defending the decision to support life at all costs, many other uses of these public dollars would go much further.
A reasonable solution would be to allow the family to decide in the first days and weeks and maybe even several months. But not for a decade.
64
@Craig: First talk to me about how much we spend for the Pentagon & related expenses every year. Then talk to me about how much it costs for our worse-than-useless "president" to spend his time golfing at OUR expense.
THEN we can get to the issue you raise, although anyone who frames this fraught human issue as a discussion of "opportunity cost" is, IMO, already coming at this from a bean-counter's mentality. You are basically advocating doctor-decided euthanasia.
And, BTW, there are plenty of situations where someone's life is severely compromised yet killing them is not a choice (not yet, anyway). I know a man who had a terrible stroke 10 years ago - he has many deficits BUT his intellect is intact (even though he can barely speak, he knows exactly what is said to him and what he'd *like* to say in reply), and he is able to eat & drink & toilet himself alone. So: he's costing "society" a ton of money for his home in an assisted-living complex (as he doesn't need a nursing home) - yet he is NOT going to die of his condition anytime soon; he's already lived with it for a decade. What do you think should happen to people in that situation? Do you advocate they be done away with via overdose, b/c their "quality of life" (to you) is not acceptable, and b/c their cost to "society" is high?
7
Good Lord @L, are you saying we can't even ask whether it's a good idea for society as a whole to keep people alive in VEGETATIVE states for DECADES unless all instances of wasteful spending have been eliminated? And BTW no one is saying here that disabled stroke victims with intact intellects aren't worth keeping alive. That is quite a leap to reach that conclusion from someone simply musing whether it is reasonable to expect taxpayers to foot the bill for ten years and counting to keep someone "alive" who literally can't do anything and has no intact intellect. That poor woman is literally wasting away. Her muscles are contracted from not moving for ten years!She can't eat, talk, think or communicate. She can still grimace apparently. Is that a meaningless reflex or is she uncomfortable or in pain? No one knows. What a terrifying thought that is. Beyond the financial costs, we should also be asking whether this type of existence constitutes inhumane treatment for the patient. Does nothing else matter but whether her sisters are happy? And yes, we should be able to ask if society should condone and pay for such "care" without being accused of wanting to do away with everyone (via overdose) who requires expensive care!
1
The question of continuing life support needs to be framed sifferently. Ideally, family members aren't making any decisions. Their role is only to convey the choices the patient would make if she could speak for herself. I have not met a single family member who told me that their loved one wanted to live like this. Yet making families responsible for decision making is too big a burden to bear for most. So remove the burden. Ask them what the patient would want. This is their role. Even in these difficult circumstances you may be surprised how that slight difference makes it easier for families to move forward despite catastrophic circumstances.
58
There is another issue at hand that is rarely discussed in these situations and that is the community good. Clearly this is a loving family and more than likely Catholic since they are described as Spanish speaking. Catholics tend to believe that life is sacred no matter what the condition of the person. They may also believe in the redemptive suffering of their sister/mother.
But as persons living in community, we also need to ask, is the decision to prolong this life good for all? In all likelihood, neither the patient nor her family are paying privately for nursing home care. Her care is probably paid for by Medicaid. Is it ethically correct to use up financial and human resources when these are both so limited in today's health care setting? There was not even consideration given to sending her to the ER for a feeding tube replacement when the less expensive option of waiting to send her to a Gastroenterologist's office the next day would have been appropriate without doing her harm. Medicaid was paying for it.
As states begin to cutback and limit Medicaid for individuals, we need to consider how we allocate these resources to patients.
Also he author fails to mention any discussion with the family of choosing not to reinsert the feeding tube. There is no obligation to resume a futile therapy. Perhaps after ten years the family could be ready to let the patient go, allowing her to die a natural death. This should have at least been offered to them.
90
@Nan Hooyman, MD: I'd like to hear what you think should be done about Alzheimer's patients, who, as you are aware, can live for 10 or more years needing expensive Medicaid care in a nursing home.
Should they be terminated by a doctor, since it's clear that they won't get better? And do the family members have any say in that at all, or does the sick person "belong" to the government?
3
@L Difficult question. However, when the patient requires intubation and heroic treatments, maybe it's not a matter of "termination." Rather, it's a matter of letting nature take its course.
1
True, if her (nursing home care) is in fact is using Medicare funding (most likely); It WOULD make a spit in an ocean (of) difference to the entire social vs. private medical system... but every dollar (or 5 million) counts!
A number of commenters seem to be questioning how this woman's care is provided for financially, and further suggesting that perhaps the resources to keep her alive - as they are assuming a governmental source of funding is paying for her care - would be better directed to other programs. To them and those who have similar thoughts, I would ask that you think about the same scenario but that the person in question is 20-30 years this woman's senior? My family owned a nursing home and I worked there when I was younger. I cared for a number of residents in a state similar to this woman's and no one was suggesting anything be done to hasten their deaths. Further, I would ask that these commenters think about their own family situations and what they would suggest doing to grandma when she's no longer communicative? To those who have made informed choices and shared them with their families/loved ones, that's great, we all should probably do that. But I would also ask: are you all in good health, do you not indulge in a lifestyle for which I may be paying the tab through my taxes?
12
To discontinue the feeding tube is not to "hasten her death". It's to allow her a natural death. @Marla
7
There are doctors who continue learning throughout their career. The learning comes from professional sources - research articles, conferences, and continuing education credits. It also comes from listening to patients, listening to patient's families, and observation.
And then there are doctors who don't continue to learn, including from patient and patient families. They've stopped listening to their patients and stopped learning. They know it all.
All too often, doctors I encounter for myself or my children are done learning, done listening to patients. Oh, sure, they THINK they are listening to patients but they are not.
I recall when my eldest was an infant. She had chronic congested sinuses. I told my pediatrician she had GERD and I wanted to see an ENT. The pediatrician told me she couldn't have GERD or she would be vomiting and screaming in pain. I went to the ENT. ENT said it was the most significant case of GERD he'd seen in awhile. I went back to my pediatrician who listened to me and then later called the ENT to learn more. THAT is a great doctor.
Doctors who keep learning and growing in their profession are prized gems. And sorta rare gems. Good for this author for being one of those doctors.
29
The patient needed her family as much as the family needed her.
This is love.
9
@MDH
This isn’t really Love...it’s actually selfish and ignorant...it’s an abuse of financial resources.
And if, as some have alluded to, they may be doing it for religious purposes, wouldn’t they want to release her to enjoy the hereafter for eternity with God?
5
@Kathy...Retired RN
No, its love alright, make no mistake about that. The abuse of financial resources is not happening with that family its happening in our current president and his administration.
I've made clear to my spouse and sister that I do not want to live this way and would prefer they pull the plug. Also, while it is legal to have medical aid in dying now up here in Canada and facing a terminal illness, that would be what I would choose, it frustrates me that if I was not in a position to clearly express my wishes in that regard, my spouse (regardless of what a living will says) is not allowed to speak on my behalf to end my life artificially. I would have to likely endure needless, drawn-out pain and suffering and my spouse would have to live with that. If a family can needlessly continue a relative's suffering out of misguided love or religious devotion, then why can't my spouse(with my consent in writing beforehand, of course) end my suffering on my behalf? So you're allowed to play God and torture a relative and imprison them in their body, but you can't kill them. I can't understand that.
Frankly, religious convictions are a sorry excuse for keeping a person alive with machines, and it doesn't even make sense. If you take a person off of mechanical intervention, are you not then leaving it in God's hands, as many religious people claim they're doing by keeping a person on life support? A recent study showed that religious people are more likely to seek out heroic interventions. I believe it, but it doesn't make sense to me at all.
96
@Joanne
Maybe heroic interventions are sought because they're afraid they're going to hell.
6
This is sad, poignant, and infuriating. The system is set up to keep this woman alive in a state close to death with no hope of meaningful experience in the world while young pregnant women don't get pre-natal care. At a certain point if the family wants to keep someone alive in suspended animation they should pay for it themselves and free up the government money for pre-natal care, diabetics, and a million other more rational forms of health care.
139
And you know the government is paying for her care how? Please point it out to me as I seemed to have somehow missed it. @Westsider
1
@Marla
Unless the family is fabulously wealthy, she's on Medicaid and probably has been for several years.
19 years ago one of my brothers ended up in this state following series of cardiac surgeries. When I spoke to the neurologist about my brother’s prospects, he was anguished in his response. My sister-in-law waited for our geographically spread family members to arrive. The hospital staff were supportive and caring. But in the end, we made the decision to stop life-support, and he died four days later.
This was a terribly difficult decision to make, incredibly painful. This was especially true because my brother’s hand continued to grasp and he grimaced; all signs of life to us non-professionals.
The author is right, these decisions are personal. The commenters are right, who pays to maintain these lives, and could this money be used to support lives that haven’t effectively ended? No matter who “wins” this argument, no matter which forces push decisions, the impact on the family never ends.
120
@Susan Lee Miller
Thank you for your insightful comment.
My family went through the same process when my niece was deprived of oxygen for an extended period of time and her father chose to let her go without the help of life support devices.
We recently had the choice of moving my Mom, who had dementia and pancreatic cancer, into a nursing facility or home hospice. We brought her home and cared for her ourselves both because we couldn't afford a decent care facility and we wanted her to die in the multi-generational family home she'd lived in 50 years.
As much as it tears me apart to say this, I'm grateful she lived less than two weeks after arriving home. Honestly, she deserved to have better care than we could provide in that, in spite of reading the hospice guide and consulting nurses by phone, we were unsure how much pain she was in and how much/often to administer her pain meds.
This scenario is repeated all over the U.S. on a daily basis. It's heartbreaking for the patients and the caregivers.
We need to give people agency over how and when they exit this world.
65
Isn’t it interesting that our wealthy, technological society
likes to boil down health needs to a matter of money and who
gets it. When it is your loved one the money is supposed to be
the consideration? The needs of the family count too. The love
this family has and the devotion should be a lesson for us all.
17
@Linda
Golden Rule: “Do unto others, as you would have them do unto you”.
If you personally, can honestly say, that you would want to be kept alive in a vegetative state this way, ok...that is your choice....but carefully consider the following issues as well.
I wish those without medical experiences could spend some time in hospitals and nursing homes for a few weeks and see what we see, and do what we do...it is not pretty....you might certainly then reconsider your options.
And, yes, whether we want to or not we have to consider the staggering financial cost to society that is increasing exponentially with every decade. It is fiscally irresponsible regardless of how much money you have or don’t have to disregard the costs. Honestly, where is the money and manpower going to come from to keep everybody alive?
72
@Linda
If the family didn't have the resources to move the patient into a good quality well staffed nursing facility, they may not have made the same decision.
Vegetative patients need almost constant care, and most affordable medicare/medicaid facilities are understaffed so the patient may not be turned often enough to avoid bedsores, or may lie in his/her waste waiting to be changed for hours, or an issue with the feeding tube may not be caught until it becomes a bacterial infection.
So it all comes down to the question of financial resources for most of us anyway.
16
Touching but poses a few questions. Among them: who is paying for her care? Not her sisters I would imagine. When families make a decision to continue care of someone who has no meaningful chance of recovery the cost is borne most often either by taxpayers through Medicare and Medicaid or policyholders under private insurance. As a society we have a stake in these decisions. And we should not ignore their impact on the cost of health care for all of us.
130
@Lupi I agree that society has a stake in this in economic terms but the economics are far more complex than just what it costs to care for patients such as this. Actually what it costs for patients such as this is minuscule compared to what we have 'agreed' to pay in administrative overhead, excessive expensive diagnostic testing, and minimal preventive care. If we would address these issues our society just might understand that we do have room for patients and families such as the ones Dr. Ouyang writes about.
23
@Lupi Medicaid and Medicare pay for a whole host of things that I suspect each of us individually may not agree with so does that mean we all get a say with respect to paying for those services as well? Medicare most certainly pays for someone with COPD due to years of smoking. Do you want a say in how that person is treated? How about the person who just simply lives a long life, but isn't able to communicate with their family and loved ones any longer? What do we do in that circumstance? My family owned a nursing home where I worked when I was younger. I saw plenty of people who were in a similar state to this woman, but who would been 20-30 years her senior. They would have been on Medicare and/or Medicaid. How should we as a society treat them? Just a few questions to ponder.
10
Dr. O.
This is a very touching loving story. However, you omit any mention of who pays for all of this and what the costs are for these sisters to indulge their love. Their culture doesn't inform them of these realities, and i daresay they don't pay for her care.
It may sound cold, but there's a finite amount of resources which are going to keep a virtual vegetable alive, if that's what it is, which could go to severe need for these resources.
140
@suejax: May you never hear your loved one referred to as a "virtual vegetable." It doesn't "sound cold" - it IS cold!
BTW, while we're allocating $$ for care, what about people who repeatedly need care for heroin addiction/overdose, for alcoholism, etc.? Many would argue they did that to themselves, so who pays, and for how long? Do you not treat people who have already had their 4th or 5th stint in rehab, and if not, why not?
What about autistic children, some of whom will need a high level of care throughout their lives? Who pays for that, and do they have to justify it?
What about people who are suicidally depressed? Do they get treatment?
What about babies who are extremely premature and may need, in some cases, a million dollars of care in the first year of life?
So: Who really represent a "severe need for these resources"? And who gets to decide who can have treatment and who can't? Especially when we're living in an era when Jeff Bezos and Elon Musk can think of no better use for their literally hundreds of billions of dollars than to "colonize space"!
6
@L All of the examples that your list are difficult and heartbreaking. But they are not people in vegetative states with infinitesimal changes of recovery.
@suejax It is impossible for me to feel any sympathy for your analysis regarding costs. When I think of the seeming infinite dollars going toward war on nearly every continent, enormous supports for infrastructure, millionaires getting obscenely rich at the public trough at every opportunity, and compare that to loving care for the precious, the human wins every time. Your crassness probably also accepts how this nation ignored the tragedy in Puerto Rico last year. Only someone with a heart near absolute zero can call someone else a vegetable.
3
Sad story but realistic for many people. Many family members faced with such a decision such as this cannot realistically get beyond the person. That is why it is imperative for everyone to have their medical directives in order/ writing. Many people cannot be decisive as they are too emotional and that does not benefit anyone.
38
Very sad . Can not help thinking about all those in the same situation of the terribly ill sister/patient who does not have a
family to help out. I also can not help think of what was going on + 10 years ago- did the sister before she was a patient make her wishes known ? if yes, what were they ? & if not, why not ?was/is there a health care proxy ? a living will ? as we age all of us need to consider having a meaningful health care proxy that family will uphold/ respect . Perhaps all the care the family of this patient is providing is exactly what this patient wanted or perhaps not.
as for me- I have made my wishes known. I do not want to be hooked up for years never mind decades . My wishes are in writing , discussed with family & known to my health care providers.
23
@NormaKate: Even so, depending on what happens, your family may STILL have to go to court to get your wishes respected by doctors & hospitals.
3
I can't even begin to untangle all the tragic threads of the story you have written here, Dr. Ouyang. Beginning with the "heroic efforts to thrust her back in life" to the intensive care of her sisters/daughter through her lifeless decade and probably more decades to follow.
These heroic efforts have transformed the lives forever of everyone involved with her in her loving care. That's love in a deeply selfless way and who am I to judge such a love as great as that?
I was very lucky in life to have a great-grandmother who lived until 99. I was 25 when she passed. I always thought then, that no one in life could ever love me the way she did. It was very deep and special. Really, she was like my soulmate. She often told me that no amount of money could ever match the love she shared with me. Well, on August 8th it was 40 years since she left me and this painful earth because she had many life shattering experiences and losses. We've never ever been apart. Yes, she's long gone. She never knew my husband or my children whom she would have adored. Her spirit is so HUGE that it fills me daily. I always feel her inside me. Sometimes even guiding me with her light and wisdom. Her love which is inside me is the one I shower my family with and the love I bring to all those around me and in every loving gesture and creative effort.
I would never want to live this way! And I've made this clear. I have no sisters. If I did I wouldn't want them to live this way either.
102
@C T
Beautifully stated and a lovely homage to the legacy of your great-grandmother. I feel the same way about my brother who passed away 5 years ago.
Thank you for your eloquent recounting of the impact one life can have on those who live after them. It is not necessary for our loved ones to be forced to maintain their physical presence on earth via tubes and machines.
17
@TM
Thanks for writing and expressing your thoughts. I'm sorry about the loss of your brother. 5 years is very fresh, like yesterday, really.
My father just came to visit me. We're born on the same day and he's 92 and American, as I am. He brought the lettters of my grandmother(not his mother) my great-grandmother was on my mother's side. I read them all in one sitting, leaves turned brown by time. They say that after a long time you forget the face and voice of your beloved one but I don't find that's true at all. While reading each letter I could swear my grandmother was over my shoulder reading them to me in HER voice. Her mother was born in Russia. I never saw her ever read a book but she had a 1,000 stories of her life there. Since I was born on Pasternak's birthday I became a poet/book artist/ and passionate reader of all Russian writers, especially, and all other great writers of the world and poets whom I love so much.
Chekhov is my brother. We live with ghosts, TM. Her face carried the story of her life, full of lines and loss. Her eyes were stars, glowing, day or night. She was the most beautiful woman I've ever seen. EVER. So glad she was mine. And happy to share her with you today.
There's not one day that passes I don't climb those stairs that led me to their home in Brooklyn. I see it all before me as if wrapped in a sweet dream that never ends.
1