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Related: Editorials & Other Articles, Issue Forums, Alliance Forums, Region ForumsA Life Worth Ending - A son’s plea to let his mother go.
The era of medical miracles has created a new phase of aging, as far from living as it is from dying. A sons plea to let his mother go.
On the way to visit my mother one recent rainy afternoon, I stopped in, after quite some constant prodding, to see my insurance salesman. He was pressing his efforts to sell me a long-term-care policy with a pitch about how much Id save if I bought it now, before the rates were set to precipitously rise. For $5,000 per year, Id receive, when I needed it, a daily sum to cover my future nursing costs. With an annual inflation adjustment of 5 percent, I could get in my dotage (or the people caring for me would get) as much as $900 a day. My mother carries such a policy, and it pays, in 2012 dollars, $180 a daya fair idea of where heath-care costs are going.
I am, as my insurance man pointed out, a sweet spot candidate. Not only do I have the cash (though not enough to self-finance my decline) but a realistic view: Like so many people in our fiftiesin my experience almost everybodyI have a parent in an advanced stage of terminal breakdown.
Its what my peers talk about: our parents horror show. From the outsideat the office, restaurants, cocktail partieswe all seem perfectly secure and substantial. But in a room somewhere, hidden from view, we occupy this other, unimaginable life.
I didnt need to be schooled in the realities of long-term care: The costs for my mother, who is 86 and who, for the past eighteen months, has not been able to walk, talk, or to address her most minimal needs and, to boot, is absent a short-term memory, come in at about $17,000 a month. And while her LTC insurance hardly covers all of that, Im certainly grateful she had the foresight to carry such a policy. (Although John Hancock, the carrier, has never paid on time, and all payments involve hours of being on hold with its invariably unhelpful help-line operatorsand please fax them, dont e-mail.) My three children deserve as much.
And yet, on the verge of writing the check (that is, the first LTC check), I backed up.
<snip>
This is a long, candid and sometimes brutal look at aging and dying. The author not only considers his ultimate demise but also the state his mother is in and the downward spiral that has been her path. It is worth the time.
http://nymag.com/news/features/parent-health-care-2012-5/
xchrom
(108,903 posts)pipoman
(16,038 posts)a lot of people don't want to buy it until it's too late to buy it. Some policies lock in at the rate purchased. If purchased at 55 vs. 65 the premiums paid between 55 and 65 can be recouped in 2 or 3 years, then the savings will only compound. I don't necessarily like the system but it is the system we have. If the current trend of declining state reimbursement for indigent residents to nursing facilities continues it will become very difficult to get into a facility without insurance (or significant assets).
Brickbat
(19,339 posts)Brickbat
(19,339 posts)their families or other people they trust. People often say, "When I get to that stage, just put me in front of a truck" or "take me out back and shoot me," but there is no discussion about how we make that happen, or how those of us who need to do the putting in front of the truck should feel about it, and how we need to let go of our own attachments and let people go who need to go.
lapislzi
(5,762 posts)It is my right.
My family knows this and will offer no resistance. I gave my daughter life. I will also give her my death to spare her the agony of my slow erasure.
independentpiney
(1,510 posts)rather than slip into the oncoming dementia that had kept her Mom in a near vegetable state for almost 20 years. The more I think about it the more I respect it as a brave decision by a remarkable woman.
sinkingfeeling
(51,457 posts)her body and eye sight fail for the last 18 months. She has her full mental capacity and is aware that she is in this long, drawn-out march to her death. She is always saying she just wishes she would die.
Brickbat
(19,339 posts)WHY AM I STILL HERE?" Just screaming it, over and over again.
lapislzi
(5,762 posts)Why the tiptoeing around? I understand the legal considerations, as, I think, do most people who seriously think about these issues.
If the physician's first and largest responsibility is "do no harm," then we need to look at what's harmful and what isn't.
Death is a natural process that comes to us all. I could (and would) argue that keeping an impaired person alive against his or her wishes is more harmful than the end that will come anyway.
Brickbat
(19,339 posts)I agree.
sinkingfeeling
(51,457 posts)What if one loses their mind prior to having physical issues and can no longer recall their promise to 'end their life'? There needs to be somebody as a 'backup'.
lapislzi
(5,762 posts)A copy with my lawyer, my husband, and my daughter. I have no fear of my "death panel." I chose them. Actually, they're my "mercy panel."
JDPriestly
(57,936 posts)That's the way the world works.
Get rid of free trade, not your parents.
Without free trade, big corporations have to pay taxes in the US on the money they make abroad.
Keeping our local economies strong and American-owned. That's a lot of what our revolution was fought about. Right now, imperialist corporations, just like the imperialist corporations that ran England at the time of our revolution, are destroying our national sovereignty and our national economy.
That is why you can't afford to take care of your parents. Because big corporations have taken the decent jobs, shipped them overseas and are paying you diddly-squat compared to what it costs you to live. You think you are doing well. You aren't, and you will be doing even worse if you don't work to make America's economy American.
lapislzi
(5,762 posts)The author takes care of his mom. That's not at issue, and never was. The author and his family clearly have the means to provide care for their mom, although not all of us do.
The point is, that people are living longer lives, and the quality of these lives is certainly questionable. When your means are compromised, the end of life for the elder is that much bleaker.
The question at the nucleus of this discussion is, "is it always desirable to prolong life?" When is being dead better than being alive in a horrid state of being and, in effect, torturing your loved ones?
I took care of my grandmother. In her dementia, she often expressed that she would prefer death to her condition (this was in her occasional lucid moments). How is one to respond to such pronouncements?
There's no right answer, and there's no good ending. But, it should be up to us and our families to decide when enough is enough.
JDPriestly
(57,936 posts)So there is no right answer. You have to deal with this for yourself and your family. I don't mean that personally about you. I mean that you in a general sense. That is I have to do that and so do others.
pipoman
(16,038 posts)it is impossible for a household with two working adults to give even adequate care. The average age of mortality has increased dramatically, people live longer but the trade off is more prescriptions, more attention to diet, and more external care. There are families who keep people at home, they are rare and tired. One of the biggest fears of elderly I hear is "being a burden on their family". This isn't a line fed to them..they have spent a lifetime leading their families..they don't want their families having to perform the degrading tasks which can accompany the aging or dying process..they don't want their families last memories of them to be wiping them for 2 years of their life.
BTW..you and I couldn't agree more on trade or buying local.
JDPriestly
(57,936 posts)infant mortality rate. My mother is living to about the same ages as here mother, sister and aunts -- a little older, but not all that much. My father died quite young.
In my late 60s, I can tell you that many of my friends died in their 40s and 50s, especially a lot of smokers, obese folks and heavy drinkers. It's anecdotal, but that's the way it is.
My health care costs are next to nothing -- as were my mother's until she was in her late 80s.
The single wage-earner in the family of the 1950s and 1960s probably was either in a profession or belonged to a union.
It's the lack of unions today that causes the heavy burden on younger working people.
Organize. Organize. Organize.
If young people neither belong to a union nor are organizing one, and if they shop at the big box stores where wages are very low, they can't blame anyone for their predicament with their parents.
Are_grits_groceries
(17,111 posts)As she slipped away piece by piece, I never knew when to say goodby. I wanted to just talk to her and reminisce one time before she was too far into the fog. I might have felt that point as a real and meaningful goodby, but then again maybe not.
As it was, i felt as if every time I left was another goodby of some kind. That is a heartrending way to handle anything. She was breathing a long time after she had apparently reached some far off shore where she would finally stay. For a while, she would pop back out of the mist like the sun through the clouds. For those few precious moments, the warmth of love travelled both ways. Then at some point, she had left.
I felt like she had made an amazing picture as she lived her life. Each day was as if another piece was added to an unfolding story told by a jigsaw puzzle of memories. It wasn't all bright and cheery, but she kept adding to her life until Alzheimer's came.
Then it was as if the pieces were being picked up randomly by some unseen hand. The time and number varied. That cruel hand would return a piece at times too. What was left to see was a person in metaphorical pieces. My memories had to fill in what was gone if I could find them. Then came the period when the hand slowly dumped all the pieces into a pile. My aunt was physically present, but her essence was broken.
I still said goodby every time.
lapislzi
(5,762 posts)I had much the same experience with my grandma. After awhile, I developed a zen attitude about it. Every day, every hour, we would embark on a new relationship. I never knew where it would take us, but I went along with her for the ride. Sometimes I was me. Sometimes I was my (deceased) mom. Sometimes I was a stranger. But every day was a new beginning. It was unpleasant most of the time due to her anxiety at the constant appearance of strangers and never being lucid long enough to settle into a comfort zone.
But I just went along with it. I kept a big basket of cloth napkins and dish towels to keep her occupied during her scary times.
JDPriestly
(57,936 posts)We love her, lover her, love her.
She has good genes and has led a healthy life -- eats vegetables (yes, that's how you do it), a little meat, never drank a drop of alcohol in her life (yes, oxygen, not alcohol in her bloodstream and brain), never smoked (you are supposed to inhale oxygen, not smoke) and tries to exercise as much as she can. Worked extremely hard, both physically and mentally all her life. Loves to read and is a devoted Democrat as well as Christian (not sure in which order).
Cares about others, knows the names of all her many great-grand-children (I can't remember them) and helps her neighbors.
She is an example to me of real greatness. In fact, I would say that my mother is the greatest person I have ever known and a great example to my life.
Elderly people are a reminder to us of how to live and where and how we end up if we live carelessly. Keep the elderly alive.
The question to this young man is: What are you doing in your life to stay healthy so that if you live a long time, you won't be a burden. It isn't entirely a matter of choice, but some choices make health more likely than others.
Brickbat
(19,339 posts)Your mother could have a stroke or seizure or embolism at any time -- as any of us could -- that suddenly and devastatingly changes her quality of life overnight. Talking about that possibility is uncomfortable and, for some people, feels like bad luck, but is hugely important for everyone. For everyone, no matter their age or their genes or their current quality of life or how many vegetables they eat.
JDPriestly
(57,936 posts)that sort of situation? There is no excuse for complaining about your parents' living too long. Those are your genes you are looking at right there. Talk to your parents.
You may not like them, but they are yours. They took care of you. Now you have to take care of them. You have no choice.
And vote Democratic, because Democrats are more likely than Republicans to share the costs of elder-care across the economy rather than impose them solely on individuals. Why shouldn't big pharma pay taxes high enough to pay some of the costs of elder-care? Why shouldn't big TV also pay those kinds of taxes?
sinkingfeeling
(51,457 posts)he and his siblings don't want to take care of her. The fact is that no matter what one does , healthy things or not, we all might someday be in the half-life between living and death. I see this in my mother right now. She was a farm girl and made all those 'healthy' choices. She now has stage IV kidney disease, cannot walk, is legally blind, and wants to die.
We've documented her wishes in a health proxy and DNR is posted on her door. Still, when she had pneumonia last year and was put into hospice, she survived.
You really think we should keep 'the elderly alive' when they cry out, "It's a violation" when somebody has to change their diaper? When they close every conversation with a wish to die?
I agree with the author that we MUST change how we deal with this! Warding off death through technology isn't the way to go. Warehousing the infirm and those with dementia isn't the way to go. Trying to care for parents when we, ourselves are aging and suffering from the same diseases, isn't the way to go. Burdening our families or our taxpayers with hunderds of billions of dollars of debt isn't the way to go.
You have every right to be boastful of your mother's great physical condition, however it can all change in a heartbeat.
JDPriestly
(57,936 posts)That is enough.
magical thyme
(14,881 posts)and expressed her wishes verbally and in writing ahead of the surgery that shouldn't have happened.
She refused medical care, repeatedly, at that critical moment, and her wishes were ignored. Some doctors and nurses can get pretty pushy and manipulative with the elderly. I'm sure they think they are doing what's right. But they won't be the ones suffering afterwards. The patient will too often is ignored or talked over or patronized. They are not treated with the true respect that we all deserve.
Brickbat
(19,339 posts)if there is a level of care that no longer justifies the cost or effort. It's not talking about "how do we pay for your care" or "who will pay for your care," but "there may come a point where I don't want to live anymore. How will we know what that looks like, and what can and will we do about it? And can I trust you do follow my wishes?"
lapislzi
(5,762 posts)while we still have our faculties, when circumstances are not forcing our hands. These conversations need to be ongoing as we age and as the world around us changes.
I don't necessarily want to live long, but I do want to live well. The conditions under which I choose to live or not live are the purview of my family and me.
Brickbat
(19,339 posts)Pretending these are conversations about health care, elder care, Medicare and other insurance is simply dancing around the issue. It's about the diminishing returns that elder care can increasingly deliver. Some families won't have to worry about these issues, but no one will know if they may have to deal with it or not until they suddenly have to.
It's hard to talk about, but so important.
JDPriestly
(57,936 posts)So we have to talk to our loved ones very openly and bluntly about how we want our lives to proceed.
Brickbat
(19,339 posts)The time for the conversation is now, for everyone, as families and as a society.
JDPriestly
(57,936 posts)No one else can decide that.
So you need to talk with your parents before they are seriously ill.
And you need a living will for yourself.
It isn't just the elderly who can be stuck on a breathing machine for what seems like an eternity. Talk about purgatory. But that is a decision that only the person whose life is at stake or someone with the legal authority to make that person's decisions can or should be able to make.
As I may have said, I've had that talk with my children and my mother. We know where we stand.
dmallind
(10,437 posts)Hard-working teetotal vegetarian non-smokers get lingering cancers and dementia too.
Boozy fat chainsmokers live long high quality lives too.
Response to JDPriestly (Reply #15)
sinkingfeeling This message was self-deleted by its author.
magical thyme
(14,881 posts)Congratulations on your mother. Understand, however, that she will not live forever and that she will not stay healthy forever. No matter what she does, no matter how much she loves and is loved, no matter how many vegetables she eats...eventually she, too, will decline and die.
And as he writes, it seems that the longer you live, the longer the decline and the greater the suffering.
You may someday find yourself in similar shoes to the author of this article, watching your mom die a chunk at a time for a few years.
My advice to you is to re-read this article this time paying a little more attention, and prepare for the suffering that will inevitably begin sooner or later.
Smilo
(1,944 posts)was when an ex-nurse came in to the ER and spoke with the Nurse in charge - her husband had alzheimers and was no longer "present", but kept getting different illnesses that took him further away from her - the decision was to just give him a nice dose of morphine and let him drift off - this was done with dignity and love and I was lucky - yes lucky to witness the care, respect and compassion the nurse gave this man and his wife.
I would like to think we could all be so lucky.
My dad died very quickly, my mum was not so lucky - she became ill and never fully recovered, just catching more bugs and getting bed sores, etc. She became delirious and frightened in her delirium. We felt guilty, helpless and so sad at seeing this wonderful woman leave the world like this. As with many her actual death was not at all bad.. it was the period leading up to it that was bloody awful and I would have done anything to have spared her of that.
Just because the body can seem to go on and on after it is worn out doesn't mean that it is fully functional or should have to.
We should be looking at peace, mercy and respect for those who are dying - not letting the corporations calculate how much they think they can gain from selling us "hope". We all die, unfortunately some are not allowed to die when their time has come and that is just cruel.
Viva_La_Revolution
(28,791 posts)thanks for posting this, Grits. It helps knowing we're not the only family dealing with this. We're lucky enough to be able to take care of her here at home, managing her pain and interacting with her when she's alert. She broke her hip almost 2 years ago, pneumonia last year. The only thing worse would be if we couldn't take care of her here.
sad sally
(2,627 posts)to ask Mom what she said and then what it meant). Mom said before miracle medicine could keep pneumonia suffers alive, old people said they knew their time had come when they got it, and they were (usually) glad.
hedgehog
(36,286 posts)"My siblings and I must take the blame here. It did not once occur to us to say: You want to do major heart surgery on an 84-year-old woman showing progressive signs of dementia? What are you, nuts?"
Physicians are trained not to give up. The people in ICU are trained, not to give up. It's up to the family to ask the hard questions, and to be willing to say it's time to let be.
It's up to each person to designate someone to make these decisions. Families often have some really strange dynamics, and it's cruel to leave everyone and no one in charge. My father has designated my brother as his primary, me as his secondary. He has expressed a wish to be found dead at home.
I strongly recommend this article to begin the discussion:
http://www.newyorker.com/reporting/2010/08/02/100802fa_fact_gawande
Are_grits_groceries
(17,111 posts)is one of the most insightful and humane physicians writing about medical subjects. I highly recommend his work.
magical thyme
(14,881 posts)they see the future of their patients every day, in the patients that came before. They have an obligation to raise that subject.
A few years back, I watched an toddler in an adult's body pitch a fit because a doctor recommended not doing surgery on her 80-something year old mother with a slow growing type of tumor. The doctor kindly explained to her that her mother is far more likely to die from other ailments long before the tumor became a problem, and the suffering brought on by major surgery on a person at that age was terrible. The idiot-child daughter was screaming about suing the doctor.
So I wonder if some doctors stop broaching the subject because of the reactions of infantile children?
cally
(21,593 posts)I'm beginning this journey with my parents and siblings. This will help us think about these issues and open the discussions more. We are currently fighting among ourselves and each sibling is at different stages of acceptance. I think this will help us going forward.
Hell Hath No Fury
(16,327 posts)Wasn't sure if you had made the migration. Miss so many of our old friends who aren't here anymore.
cally
(21,593 posts)I've missed all my DU friends.
felix_numinous
(5,198 posts)with dignity. There has to be a better way than to watch your mother (like mine) drugged and confused, who doesn't demonstrate that she knows me anymore, to exist in a sort of limbo for years. Few people (in their right mind) would EVER choose this for themselves.
Death with dignity on the other hand is something I do envision for myself, I wish more states had laws that support this like Oregon.
Hey to all the baby boomers with parents going through this--I'm with you.
magical thyme
(14,881 posts)I had to awaken an elderly women in dementia at 2am for a timed draw. She didn't know who she was, where she was, who we were. Her nurse patiently explained over and over where she was, how she got there, that no, we were not going to operate on her.
The poor woman was terrified. She lives in constant confusion and terror, vulnerable, naked in a strange nightdress, in a strange bed, imprisoned, surrounded by strangers doing terrible things to her.
Thank dawg for the nurse finally accepting that she was refusing the draw.
Most of the patients at my hospital come from the surrounding assisted living, nursing homes and alzheimer's center that make up our "campus." What we do to dying people, in the name of "healthcare" is an abomination.
The author is right in that it steals from all of our lives. The money spent torturing these people until their bodies finally die is a beyond a waste.
My anatomy professor walked into our first day and announced that she's 63 and getting old. She's lived a rich, full life. "If I go down, please go get a cup of coffee or something. Step over my body," she said. "I do not want some young intern breaking all my ribs pounding on my chest. Just step over my body and go get a cup of coffee. Whatever you do, do not call 911."
My co-workers and I quietly talk about it. We do NOT want to go into nursing homes EVER.
One co-worker recently had to put her parents into a nursing home. Her mother has alzheimers and was thrown out within 2 weeks when she started becoming violent and tried to shove a patient with a walker down a flight of stairs. Also took a swing at a nurse. Now she's an hour away in an alzheimers facility that charges $15K/month. Her father's room at the nursing home is $5K/month. She is beside herself with what to do. The choice with her mother seems to be one drug that pacifies her, but leaves her starving herself, or the other drug that she eats well and becomes violent on.
Personally, I have locked up a stash of pain killers that are my ticket out of here when the time comes. Hopefully I'll know the right time to take them, and before it's too late. As my horse friends say, better a week too early than a day too late.
I cannot imagine being trapped in the nightmare that the patients are in. Terrified or enraged, helpless, surrounded by strangers, seems to be the usual mental state. Oh. joy.