It’s true. I know it changed for my dad. Before his final illness, he had lots of problems including limited mobility and dementia. But he was happy. He enjoyed watching TV and napping twice a day; he liked the food in the AL dining room. When family visited, he couldn’t really keep up with the conversation or participate much, but he enjoyed seeing our faces and the energy we brought into the room. He liked to know what his grandchildren were up to – even if we had to tell him repeatedly – and he’d occasionally be up for a discussion of politics with me, as we had been doing all of my adult life. Every time I came to visit, he got a huge smile on his face.
If his 45-year-old self could have seen what his 85-year-old self was reduced to, he would have been horrified. But his 45-year-old-self wasn’t there. Living with an elderly parent often means living in the moment, and in the period before he got sick, he was happy. That was a life worth living.
When he got sick and spent the last 4 months of his life shuttling from hospital to skilled nursing and back, when he had brain damage from a respiratory crisis, when he couldn’t recognize his daughter and didn’t even remember that he had grandchildren, when his speech was garbled beyond recognition due to the brain damage, when there was no hope at all that he’d ever be able to go back to his life of watching TV and napping outside of a nursing home – that’s when we started to re-think the idea of “keep alive at all costs.” As @travelnut wisely said to me when I was going through it, (paraphrasing) the time comes when we need to start thinking about giving them a graceful exit.
For me pain is a factor. I must have a pretty low threshold for pain. Last year I had very extensive shoulder surgery, I never imagined how much pain I could endure. I literally cried daily for months and there were a few moments I didn’t think I could handle it any longer. At the time I realized that chronic pain would probably be the end of me. It’s one thing to be disabled, lose your faculties, but to be in constant pain is my new line in the sand.
My mom was very clear to all of us about being intubated, but at the time she crashed it was done without talking to us and without regard to the dnr they knew she had because they thought she’d come around. We pushed to have it removed. I’ll never forget her looking at me after they did it, and it haunts me now. It was her last conscious moment.
@great lakes mom, it didn’t! This is some of what I research for living (the intersection of suicide and chronic health conditions), so I find this to be a super important topic. I just think that its important to acknowledge all areas of the discussion, including how attitudes about disability play into it.
The idea of what we determine to be a life worth living or not is very interesting. For example, there are some people who believe very strongly that people with severe mental illness should be eligible for physician-assisted suicide while others believe that only people with severe physical illness or dementia should be and still others believe that only people with terminal illnesses should be. All of those have social implications–i.e., is psychological suffering as “real” as physical suffering?
I don’t think there are rules. But please note that we didn’t assist my dad in committing suicide, or even consider it. What we did was acknowledge what his body was very clearly telling us – that he was ready to die – and we stopped trying to prevent it from doing so. Big difference. IMO.
There was a very high-profile story where I grew up of a family whose son was beaten almost to death at college and suffered severe brain damage. He somehow remained alive, but in what most would consider a vegetative state, and has been kept alive via life support for years now as he goes through procedures and is unable to actually LIVE life. They have received many donations along the way to help provide for this situation.
I understand that these are extremely tough decisions for any family to make, and maybe it isn’t my place to judge, but I really feel morally opposed to this. I would hate to be kept alive in this manner by my family. I see no dignity in it.
Then there are the situations like that of H’s aunt, who had severe alzheimer’s. Her husband shot her and then himself. It was horrifying for everyone, despite the severity of her condition.
@rosered55 Good point. Ask me now and I might say that “being able to play tennis and walk for miles in the mountains makes life worth living”. But at 90, I might say that just seeing the sun shine makes life worth living.
Several years ago I read a story about a man who was determined to live as long as he could, even with an ALS diagnosis. He was a doctor, an oncologist, and made a lengthy protocol for his care so he wouldn’t die from a bed sore or from an infection. He lived to be 63. Maybe the difference is that with ALS you still have your brain even though your body fails more and more. He wanted to be able to watch his children get married, and he lived long enough to meet two grandchildren.
I would hate to be kept alive in this manner because I don’t want my family (kids) to have to deal with it if there is no hope of me coming back to any reasonable quality of life. Like the ALS guy mentioned above – it is mostly about my brain. If I can still take in the outside world and know something of what is going on, keep me going. If I am not able to do that, feel free to do whatever you need to (within the law) to end it.
I think many of us say, “I would never want to live that way” not meaning I would want to die, but that I hope that does not happen to me.
My MIL had a severe stroke very young, she never seemed to want to die instead of be unable to walk, be bedbound, be incontinent, be in pain, etc. It was interesting, because I definitely thought that I would never want to live that way and yet was very aware that she enjoyed my visits and stories and watching her shows.
I do feel strongly that once someone has dementia, it is better to give comfort care and not work too hard on length of life, just based on people I know with Alzheimers and a pacemaker, or dementia and open heart surgery, serious medical intervention seems to not be a good thing in the long run.
I can live in pain, crooked, blind, without a leg, you name it, but when my brain goes… so will I. I do not see the need to maintain my body, a shell with no me inside of it.
Ah, but there are degrees of dementia and one can have “mild” or even moderate dementia for many years and “seem” quite happy. What should happen with medical care of such people?
It’s so difficult to decide for another person who APPEARS to still have enjoyment. How much pain vs enjoyment is “fair”? How is that even measured?
We make these choices for our pets and animals but nearly all seem to have much more difficulty with humans.
My aunt, a college professor for her whole working adult life, also served on her burrough council and was very interested in politics. As she slid into Alzheimers, she didn’t know who the president was, couldn’t take care of basic personal hygiene, and soon could not recognize her own kids and grandkids. No way was that “happy” for her or anyone in her family. She was that way for eight years before she died. I really, really don’t want to put my family through that.
I used to volunteer in a nursing home. Some people were there for rehab for a few months, some were really far gone. Some who were far gone were still very happy. One woman said “yes” all the time, with a great deal of joyousness, when we asked her a question. Our questions had to do with the art or flower project we were working on so they tended to be happy times.
Another woman would ask all the time, like every 10 minutes, “do you know who I am”? And I would say, “yes, you’re Judy and I see you every month”. That answer was enough to satisfy her. But she would forget and ask again. As long as she got an answer, she was happy.
Some older people had reverted to a childlike sense of wonder. True, they would have naps and diapers too. But they would be entranced to hold and look at a daisy and place it in a vase. Just entranced. The people with all their mental faculties would often get competitive about what we were doing and unhappy due to that.
I don’t think it’s simply a question of losing your mind vs. losing your body. I wouldn’t want to be in bad, chronic pain. Neither would I want to lose my memory or become afraid. Misery is the problem and sometimes, whether it’s mental or physical, it is just persistent and modern medicine can’t help enough.
Yes, losing your mind or body can be a VERY slow and prolonged process. It will require others to provide care when one can no longer self-care. With medical science, people can have their bodies functioning at SOME level long after the people can no longer perform self care.
I don’t have answers but do see the dilemmas faced by people who are burdened by caring for others–financially, physically, emotionally, and in other ways.
@HImom is exactly right that there are varying degrees of dementia and people can live with dementia for years. What I often come in contact with daily as my job as an occupational therapist is a true knowledge deficit regarding the disease. Most medications are most effective when started in the early stages of dementia , several of the newer ones work with moderate stages of the dementia . The problem with this is many families and friends completely miss the signs of early dementia . They tend to overlook them and dismiss them as Mom or Dad having a bad day, or attribute it to Mom or Dad being stubborn or getting older. By doing this, the prime time for treatment is lost. I encourage anyone to research dementia so that you can become more alert with these subtle differences in your loved ones. A good resource is anything written by Teeva Snow. She is able to provide great insight as a professional caregiver and as a DIL of a woman with dementia . These decisions are never pleasant or easy , but knowledge is power. It can make difficult decisions a little easier.
About 10 years ago, I had an accident and needed to use a wheelchair to get around for about a month afterwards. I discovered that it really wasn’t that bad. Yet some people will look at a wheelchair user and say “I would never want to live like that.”
This experience got me thinking about other types of disabilities and health problems. Some of them – things far worse than needing a device to help with mobility – may indeed look so bad that I would question whether it’s worthwhile to live like that, but if I’ve never been in the situation, how can I know?
On the other hand, some health problems that seem minor to me may indeed make life “not worth living” for another person. In my extended family, there was a man in his 70s who was hospitalized for a life-threatening but potentially treatable illness. He refused treatment and asked for palliative care only. The reason: he had had persistent insomnia for several years and felt that because of this, his life was no longer worth living. When he became ill, he was glad to die just to avoid the misery of endless sleepless nights.
None of us can really get inside another person’s head.
I have seen my mother and my in laws suffer over their end of life, and it is a very difficult and heart wrenching time.
MIL had alzheimers to the point where she did not recognize her husband or granddaughter. Somehow she always recognized her son and me. She was medicated so that she would not be screaming all night, and eventually she died of “natural” causes - most likely a side effect of the medication. When FIL called the ambulance because he couldn’t wake her, it was our nightmare that they would get her heart going and she would be in a coma for a long time. FIL wanted all things done even like that. They didn’t get her heart going, so this did not happen. For FIL, when he did not wake up, the EMS said he was gone and he was not taken to hospital. My own mother had morphine which eventually stopped her heart. She was in terrible pain.
I have to say that I really don’t understand people and their adult children who think that being unconscious and hooked up to machines without a chance of recovery is good or valuable to the individual. I am not saying don’t let them have their choice, that is not for me to say, but I really don’t get it.
From an ethical standpoint, where other people’s judgements come into play is usually the cost of the resources. There was an old study on the medicare end of life cost and it was in the hundreds of thousands. This is/was seen as a problem in that the utility does not seem balanced with the cost. When people say they don’t care how much it costs, they usually are not personally paying anywhere near what it really costs since some type of insurance or government benefit is paying for it. There is an inherent utilitarian conflict (the individual versus society as a whole). I don’t presume to have the answers.
So sorry for everyone who have lost their loved ones.