Is extended end-of-life common? How many people will require years of caregiving before they die?

I think modern medicine has done so much to extend life...but they have done nothing to extend the QUALITY of life. Seeing loved ones fade into oblivion is heartbreaking. Their hearts beat and their lungs breath but their minds are gone and the "who" they were no longer exists. It's like keeping an empty shell alive. I know "pulling the plug" is hard to do...I had to do that with my own father...but it would be far more humane than watching someone exist like a living corpse.

I agree with what all of you have said. My mom is 90 and became very ill after back surgery over 3 years ago and wasn't expected to live. She went into a nursing home and is on Hospice care. After many months she slowly got better, but is wheel chair bound and was diagnosed with dementia. She has NO quality of life and I have not had much of a life since all this started. As you said, and I tell people all the time, I'm certain she's going to out live me. This is not where I wanted to be at the age of 64. I see no point in modern medicine extending one's life when you can't live your life. It stinks, and makes me very bitter.

balexander9: I feel the same way. I am only 62; my husband with dementia is 78. His Mother had this disease, too, and lived to be 92. I cannot imagine how I will deal with this for another 14+/- yrs if that is what happens. I, too, believe my husband will outlive me. I have no life and neither does he. But I am young and healthy (except for severe depression brought on by all of this). do I really have to sacrifice what time I have left to this disease? I know life isn't fair, but I didn't know it was supposed to be brutal, too.

I have to say, Ferris1, that this is the 2nd time I've read that you have discouraged people from their voicing their opinions/views. To tell a forum member that "I don't think this is the forum for you since you are not a caregiver of someone with dementia, but you are welcome to read about those caring for someone with end-of-life issues." is really nervy. People need this website/forum to be free to ask ALL questions without being "scolded" that they shouldn't be here, "but you are welcome to read about those caring for someone with end-of-life issues." REALLY??? Well, thank you very much. Whirlpool had a LEGITIMATE question (albeit brief) but without knowing all her personal facts, you jumped to the conclusion that this forum wasn't for her because she wasn't dealing with someone with dementia. How did you conclude that from her original question? Please be more empathetic in the future.

Whirlpool ~ please know that you are welcome on this forum to ask ANY question! To answer your question, in my humble opinion (IMHO), unfortunately, with the advances of medical care over the past 50 years, it has made it pretty much a given that "extension" of life is valued over "quality of life". I have had this discussion in depth with my 87-year old mother-in-law. She was always very active (up until a couple of years ago) -- she is still living independently with my FIL -- and in her opinion she has had a pretty much happy life and has told me numerous times she's "ready to go" and has no regrets. On the other hand, my own mother (age 84) who also still lives independently at home but struggles with mobility and (I believe) unresolved depression about my father's death 5 years ago, refuses to discuss end-of-life issues in any way, shape or form. I think she just hopes that she will one day just not wake up and that will be that. Well, guess what, that most likely will not happen. I think the elderly (like my mother) would like to live forever and not think about the fact that they no longer will be walking this earth and as someone else mentioned (I think on this forum) that they are scared that no one will remember them and that their life was for naught. Unforntunately, for the vast majority of the earth's population, that will be true. Unless your famous, or Marie Curie, Elvis, Abraham Lincoln, etc., only one or two generations will remember you after you pass. That is a fact and it is what it is. You can only hope to live a good, happy life and enjoy it while you can.

Butterflygrl, I hear you. I get it. Elderly people can become very angry with their circumstances and their loss of control and sometimes it may or may not be within their power to change their situation. Do not feel guilty for your father's circumstance. As you said, he lived his life the way he wanted and now when he is unable to control his surroundings, he is taking it out on you. Just know you are keeping him safe and if he has to be angry about that, then so be it. Stay strong. In my girlfriend's situation where she had to put her mother -- now 93 -- into a nursing home several years ago because she kept falling and could not live on her own anymore, she visits her Mom 3 x a week and still, her mother makes her feel guilty about it. Her Mom felt that it was her "job" to care for her no matter what, that she should even have left her husband and move in to HER home and take care of her. Ahhh, I think not. My girlfriend struggles with this guilt all the time. I just tell her that no matter what, she did the best she could for her Mom in finding her a NH that takes fairly good care of her and she is safe. She is an only child, by the way. We have this discussion on many occasions. Her mother never fails to guilt-trip her at nearly every visit. I don't know how she does these visits 3 x a week. If it were me, I'd be cutting it down to once a week.

But, I digress. To the original question, I think the answer in the future, is a change in the way the medical community thinks about preserving life at any cost. My son is in medical school and the courses he takes on medical ethics are very thought provoking. A doctors creed is "do not harm" but in essence, is keeping one alive under any circumstances "doing no harm". There are some who say they do not want to be kept alive if their foreseeable quality of life will be less than ideal. And then there are those who feel they want to live as long as possible no matter what the emotional/physical/financial cost becomes. That's why the medical community has tried to encourage everyone (at every doctor appt or hospital stay) to make their wishes known through a health care proxy or medical POA. And even then with those things, it is not black and white. My father signed a DNR order and at 11 pm at night I was awakened by a phone call from the hospital staff on duty that they had started CPR on my father and they wanted to know if I wanted th em to stop chest compressions. Really??? Are you kidding me??? What the hell was the DNR he signed for? To this day, I still feel guilty for telling them to "stop" and let him go. Did I make the right decision? I think so. Do I feel guilty about it? You bet. I thought do not resusitate meant just that -- do not resusitate if someone goes into cardiac arrest. I am still angry to this day at the hospital staff for making me make that decision when clearly my father had already made that decision for himself. He was another one who would not discuss any end-of-life decisions with his family (wife, kids, etc.) and it was only when I asked the hospital staff to discuss with him a DNR that he signed it. It broke my heart that the nurse who had that discussion with him, told me later that he was crying when he signed it. I am crying while I write this now.

To all the caregivers out there, I say God bless you. It is a difficult journey and ((((HUGS)))) are sent to all.

Ferris1, I am deeply offended by your response. I AM the responsible party for my mother who is likely to be diagnosed with early stage dementia within the next month and has suffered an undiagnosed form of mental illness all of my life. I live long distance and have been working my a** off to help her find help that she will accept locally until I can work out a better solution. She struggles with many issues and is on the edge of no longer being able to live independently. I also will be responsible for the end of life care for a second family member after her. So yes I do belong here.

I also like to ask questions that make people think and explore issues for the future. My original post was clear - I am interested in the question of whether the need for extended caregiving is how aging typically goes for everyone now in modern times. Personally I'm interested in this wondering what is ahead for me with my own two current and future caregiving situations and then for my own aging as well.

Again you have a lot of nerve telling me I don't belong here. I have a hell of a lot to contribute even if I don't walk in the same shoes exactly as many of you yet - but I don't feel quite so welcome anymore.

Apologies to everyone that has been good to me here, this just really hit a nerve.

It is interesting information about home vs nursing care. Unfortunately, not everyone can afford home care and are forced to do Nursing care. I am thankful for the nursing home that my father is at. He hates it of course but he hates anything but being on his own at home. He didn't sacrifice for us when we were little so my sister has not time or energy to spend and i understand that. I am trying to do the best I can but I am one person and I cannot lift my father nor can I deal with his fits, his constant need to move around when he can barely walk. He gets up all hours of the night and refuses to sleep even though he has fallen so many times. He will not use a cane, walker, whatever. There is talk about being like a child and in some ways this might be true but children try to learn, they are excited about new things, they are playful and delight at the smallest things. Old people just b**** and moan and carry on as if they are the center of the universe. I have decided in my dad's case that I am not going to allow anyone to make me feel guilty and I refuse to heap it onto myself. I went into this with a gung ho attitude. I was going to rescue him out of that NH and take care of him myself. But I realized that no matter where he is, he will be miserable. Then he will just spread this toxicity to me and I already have enough to deal with just from my childhood alone. I can't take on more. I love my father but he has to learn to deal with the NH and NO I don't see the point of anyone living on and being miserable. I don't understand this attitude. If anything, they should just take the pain meds and whatever it takes to make them chilled and just try to enjoy what they can. I am now starting to understand why people stay away from Nursing homes! I always thought it was just pure apathy but now I see that every time I go, it just upsets my dad because he can't do all that I am doing. Just getting in the car going places. I guess I don't understand this generation. Maybe it's true, they are the ME generation. I don't recall much ado made by my grandmother about the end of her life. She just did what she could and went peacefully. These elders are just totally self obsessed. I told my father the other day: look dad- you had a good run! you trashed your body with drugs and lived very hard and then you got diabetes. You lasted another 15 -20 years or so before you started to decline so you have to accept where you are and just deal with it. I don't understand it at all- I have to deal with things all the time that I don't like. I don't complain about it, I just trudge through it and get it done. I notice some people at the NH who seem to be content to just chill out and visit with each other. NOT my dad. He has to create a big scene and have drama. It's just ridiculous. I realize you all probably won't agree with me but my dad was incarcerated twice and he lived a gang life style. So, to me, if you live this way, then your body responds accordingly. I don't buy into all of this guilt stuff about how I owe my parents this and that. It's just not sustainable to have a 2 parent household with kids and then to add on aging parents. I believe there used to be communities where family was all nearby and pitched in. Now it falls to one person to kill their selves and feel guilty for every little slight. If my dad was more manageable I might try to have him with me and that was my hope originally but it has not gone in that direction so he has to deal with it. I am done listening to what he wants. Tried that and short of going home and wandering around in the yard at 3am. or driving around like a lunatic, Adult protective says he cannot be alone and they will charge me with abuse so, there he is. Interesting note about caregivers dying before their charge. My dad's wife was a good 10-11 years younger than he and she was determined to care for him and was the reason he was able to stay on his own as long as he has. She passed away before him at the age of 62. He is 74 and once she left, he lasted another 10mos to yr without her. Good lesson about care giving. Makes me sit up and take notice. peace to everyone and groovy times. Believe me, I love my former dad. He just isn't what he was and this new person needs to get on board. :)

It depends on what the person is dying from. People with certain types of cancer sometimes only have a few months to live after diagnosis whereas with people with dementia, there seems to be no way of predicting the course of the illness. You see statistics about the average number of years a person is expected to live following diagnosis but people get diagnosed at different stages of the illness and teh progress of dementia can vary greatly from one person to the next. It is very difficult for a caregiver to put his/her life on hold, not knowing whether this will be for a relatively short time for for a decade or more. If the patient's quality of life is reasonably good, that is one thing, but there are patients with dementia who live for many years beyond the time when they recognize family members or remember anything of the life they lived before their illness. The fact that Medicare doesn't pay for nursing home care makes this a particularly difficult situation for many families, depending on their financial situation. I am 68 years old and my husband, who has dementia is 79. I have been his caretaker for a few years now and can't imagine doing it indefinitely. My husband's mother lived as a bedridden invalid until the age of 84. They way things are going, I often think that my husband will outlive me. This is not the way I want to live the rest of my life.

Short answer is yes, a lot of people need care. The three years is kind of an average. Oddly enough, both of my parents were in care for about that length of time. Sometimes it goes on longer, maybe even much longer, and of course, we would all like to be healthy and happy up until a couple of days before our time is up, at about age 100 or so, but on these forums, most of us end up here because difficult caregiving goes on and on so there is quite a selection bias. My aunt and the moms of a couple good friends and colleagues passed rather suddenly - not that they were in perfect health ot totally wildly out of the blue - but it was still a huge shock to loved ones. The challenge and grief of that happening is very real too, just different from what most of us are here about.

I would say get the best long term care insurance you can afford for a loved one or for yourself if you have a history or family history suggesting you might need it. Think of it as bankruptcy insurance.

And folks, you know who you are, or you should...PLEASE think before being harsh and judgemental with others here in this same sorry boat. Do not nitpick or seek to find the smallest flaw. Be authentic, but be kind. I can tell you that getting picked on scolded or criticized on here can feel like being beaten up. Good people have left or taken breaks from it because of this, even when people rally around and they defend themselves well...many of us suffer from self-doubt, self-second guessing, and are unfairly criticized by family including and especially the one we may be trying to care for. We should be bearing ones another's burdens, not adding to them.

I too was in shock with Ferris1's response and rude comment. As I mentioned in my earlier post my mom is 90 and has been wheelchair bound the past 3 years, and has no quality of life. Some of it because of her mental and physical condition, and some by choice because she does not want to participate in any activities offered at the AL. Before she was ill she prepared her living will and we have a DNR. She soooo did not want to end up in the condition she is now and never wanted to live like this. If she knew the real condition she's in she would be so appaled. When she would see others in the shape she's in now (before she was ill) she would always comment on how she couldn't understand why people had to live that way. She always said, "if I ever get like that just take a gun and shoot me." I feel the same way, and seeing how many are suffering like her and others, it scares the Hell out of me.

Whirlpool: I also commented earlier than no-one who feels that this forum is helpful to them should be excluded. I was also offended by the suggestion that you didn't belong here. I hope you stay with us and continue to contribute to and benefit from your communications with all of us.