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.

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.

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 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.

I completely agree, that modern medicine has extended lives, but not the quality of life. Both my Mother and Step-father have Alzheimer's/dementia, they have been afflicted for at least 6 years, mom is 72, he is 78. This disease has ran heavily on my mom's side of the family, unfortunately I have no clue about the extent of it on my real dad's side of his family. So besides worrying about them, now I am worried about myself getting it. I have gone back to school, as a Social Work Specialist, majoring in Addictions, I will always champion for a cure to this dreaded, horrible disease. This is the hardest thing I have ever done to try to get my mind and realization around the fact, that you have 1 fairly healthy (mom) and 1 where health is fading, but to be without a clue about things is just horrific. This is something I would never wish on anyone. And statistics show that the afflictions of this disease will increase dramatically over the next 10-20years.

No, not always. I am not sure I know what question you are asking. No one knows how long you are going to live. Insurance companies bet (for lack of a better word) you will live longer than you anticipated thereby having you pay the premiums for a longer period of time. 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.

medical advances have caused people to live longer but no one wants to help them when they need it, this must change, the goverment desperatly needs to change this, I take care of my mom 24 hours a day and will until she goes to be with our Lord, will keep you in my prayers, God Bless

For the purposes of planning, I would say you should plan on an extended end-of-life. I've seen it happen over and over, people don't plan on living so long and their money/care runs out before their life does. My dad just had his 92nd birthday and he sure never planned to outlive all his friends, family, wife, and savings. I haven't seen an adequate LTC insurance policy yet, for all the end of life possibilities. My father's policy paid $100 every month for a $1000 claim for home health care. Good luck to us all as we age!

Yes, modern medicine has done a lot to extend life, but has profit motivated medicine and drugs really stripped away from caregivers their true values regarding the "quality of life"...for them or their loved ones? I hope not. Modern medicine sells more anti-anxiety drugs through the process...and that is a fact.

And yes, to some degree, it depends upon what one is dying of, declining from, and over what period of time...and who is around to pitch in, to really help out. Most run for the hills...just "too much" and/or are "too busy" for the elderly, mostly these are parents that brought us into this world and cared for us when we were fraile, sick, crying and needed to be fed...to be cared for.

Is there really a big difference between an elderly child and a young child, except for age? The young child is learning, being taught, surviving, being guided and comforted. The elderly child is trying to remember, trying to in many cases..be a part of a family, fit in, control what they know is becoming uncontrollable, and to maintain their dignity. They have now become dependent, to a greater degree or not...but becoming dependent. Most elderly are sharper than you think, and ultimately is our responsibility to give them every opportunity to feel safe and comfortable...just like when someone provided for you when you were a baby, and perhaps far less cognitive, and much more dependent. We were all in the wilderness when we were born, and dependent upon our parents and/or other providers that looked out for our safety and well being. We were then, a "shell" of what would/could be. Yet today, all this debate about "quality of life" for the elderly...and all the sacrifice that impedes on "our quality of life".

Guess what folks, life is a circle of life events, from the mircle of birth, and the caretaking process... to the elderly state of human life, and the caretaking process. What's the difference between a dependent one year old and a 85 year old dependent parent? It is the cycle of life and love to provide..to be there through the good times, and the rough times. Ultimately, it is your decision and only you can answer the question of "quality of life".

In my opinion, "quality of life" is more on the shoulders of the caregivers for the elderly, and what they are willing to sacrifice to provide a better "quality of life" to the person they are caring for. In my experience, and with my elimination and/or reduction of so many antipsychotic drugs that were perscribed for my Mother, Mom bloomed back like a knew flower. And so, she realized a much better "quality of life" during the last three to four months of her life. She was alive, and not a "shell". It all falls upon the caregiver, and what they believe to be and see to believe, sacrifice for, and trust to enable and provide the best quality of life for whom they are caring for. It is ultimately, the primary caregiver's decision, absent other family assistance..often from remote family members that are not involved...and in most cases, don't want to be involved...because of jepordizing "their quality of life".

It's your decision. Maybe a question should be asked to some of our so many heroes that fought in our many wars. Ask them about "quality of life" and the fortitude it took for them to carry a wounded soldier to safety...not knowing their "quality of life".

Good luck with your decision making process.

I agree about QOL. Modern medicine has been able to keep the "living dead" going for many years now. I believe in planning for that possibility while you are still healthy as a personal responsibility. Prepare a living will..select a healthcare proxy..and make your wishes known to all..especially your physician. I beat cancer..alone..and do not want to go through that again. I have no "family" left that would care for me. I refuse to take certain medications. The older generation came from the "my family will care for me" mentality, no matter what the burden on the caregivers. Most are women and our generation became educated, entered the job market, and are often the sole support of their family or selves. I think this is a generational problem and one for some cultures. I believe the burdens will dramatically decline after then the baby boomers

I agree about QOL. Modern medicine has been able to keep the "living dead" going for many years now. I believe in planning for that possibility while you are still healthy as a personal responsibility. Prepare a living will..select a healthcare proxy..and make your wishes known to all..especially your physician. I beat cancer..alone..and do not want to go through that again. I have no "family" left that would care for me. I refuse to take certain medications. The older generation came from the "my family will care for me" mentality, no matter what the burden on the caregivers. Most are women and our generation became educated, entered the job market, and are often the sole support of their family or selves. I think this is a generational problem and one for some cultures. I believe the burdens will dramatically decline after then the baby boomers

Whirlpool -
Is the question "should I buy Long term care insurance?"

1. Can you afford it? I'm 66, and I pay $2000 a year for a medium-quality policy. It's a lot of money. If you are younger and very healthy it costs less, but it's never cheap. It would be a shame to spend that much for a few years and then discover you can't keep it up, and have to let it lapse. To die at 97 and never have gotten a penny's benefit from it because you're too healthy - that is a "loss" i'd be glad to bear.

2. Do you have assets to protect? If you have less than $200,000 including your house, and you spend years in a NH, it will all go for your care anyway, and you probably can't afford it.

If you are worth $10,000,000, then you have a great money person who can set things up to protect your assets and fund your care for years. I am in between.

3. Do you have young or disabled children you need to provide for? Maybe a life insurance policy or trust would do that better than LTC insurance. Or maybe LTC will make it easier for them to know what to do with you when/if you need care.

4. Do you have a family history of chronic disabling conditions? If so, and if you can afford it, sign up early! The odds are that you will need LTC. Neither of my parents needed a long NH stay, but we are all just one very bad fall from needing a lot of care for years. I tried to get insurance for me and my husband because he has a family history of diabetes, but even at age 60, he wasn't accepted.

5. Do you live in a state that will reward you for having LTCI when they come after your assets for Medicaid? This applies to those of us in the middle, who can self-pay for some time but not forever. I don't remember the details, but it helps.

It is a gamble. I read some statistics. There are more single women over age 85 in NHs than any other group. But. Only 25% of single women over age 85 are in the NH! Hope this was helpful

Having raised two children and now being the caregiver for my husband, I can say that it feels very different to care for a young child than it does for an elderly person with dementia, both physically and psychologically. With a young child, you know that they will develop and become more independent every day. You also can also hire relatively inexpensive babysitters. With an elderly person with dementia, you can only look forward to a decline in their independence and caregivers cost a lot more to hire than babysitters. Elderly people with dementia also have a lot of medical problems that most young children do not have. Lastly, it is a lot easier to deal with a toddler having a tantrum than to deal with someone a tantrum by an adult who outweighs you.

balexander 9..thank you for your post. I've been thinking all day about how I could respond to Marco's post, and I could not have said it better than you did. There is a HUGE difference taking care of your children vs. taking cae of an elderly parent who has dementia or alzheimers. Thank you for expressing my thoughts!

You are very welcome. It always bothers me when I hear someone say that being a caregiver for an elderly person with dementia is like raising children. Raising children is a job, even though there are days when it doesn't feel that way. Taking care of an elderly person with dementia is not a joy.

I meant to write that raising children is a joy (although it is also a job).

In 2004 standing in a hospital room, listening to all the elderly people around who were so ill, I thought "Oh my gosh, what good does it do to prolong life if there is no quality to that life!" It was my first experience with elder care and a close relative being very ill. I agree with what most all of you have said that science wants to prolong our life, however it has done nothing to provide us with illness free years and no one wants to insure you for all those extra years we get to live in hospitals or convalescent homes. The sci-fi alternative of doing away with us all when we reach a certain age is NOT something I want to ever see happen either.
To get back to your question however.....no one can say how long you or any of us will live. I would say to plan for a long term illness and if you die quickly, you will be lucky. We can all take out these policies and walk outside and get hit by a truck and die or we can acquire a disease such as dementia or alzheimer's and be ill for 5-20 years. Only God knows what is in our future.

I'm going to answer the question from a little different perspective. It seems to depend on the family. I'll go from our personal experience. When I was 7, my grandmother was pretty sick and required surgery. Her health problems esclated and she had horrible operations and passed when I was 21. My mom took care of her off and on for all those years. Sometimes she would go back home for awhile, then other times she would stay with us for months. She was bedridden for approx. 2-3 years bad.
I also had a cousin who sufferered from severe epilepsy (12-15 seizures per day, brain surgery, etc). Now, when he was younger he was more mobile and could take care of his personal needs, visit family, etc. He was bedridden for around the same amount of time as my grandmother. Maybe a little longer.
My FIL is 86, diabetic, 2 heart surgeries, mild dementia and has lived in his home up until the last month (he is in rehab) and has pretty much been mobile and able to take care of himself up until around 2 years ago. For the last couple of years it has been my husband and other hired caregivers helping him.
Now the one common thread I have noticed is that in all cases I mentioned every person was taken care of in their or a relatives home. I think it my grandmother or cousin had been in a nursing home, they would have passed away sooner. When I was in my early 20's, I thought that was just wonderful. I am now 20 years older and not so certain that a hasted death would not have been better for them and all involved. My grandmother suffered horribly going from 154 lbs. to 54 lbs. when she died. She could not eat due to an esophagus condition and the pain was so bad at the end that she said she felt like rats were eating her stomach. She kept her mind all the way to the end and requested a closed casket.
My cousin also suffered horribly and in the end could not even speak. It was a horrible situation for his young son to see.
I can think of cases of extended family members who caregived for their parents/grandparents and in most cases they kept them at home as long as they could. The ones who went to nursing homes seemed to not live long. Now is it that they just didn't have long to live anyway and going to a nursing home had nothing to do with it? Or could it be that the direct one on one attention, making certain a person eats, mental stimulation, etc. all would have added a little more time? Is more time a good thing when someone is suffering? And I have read studies where people think only those with cancer, heart failure or other ailments suffer the most but those with dementia/alzheimers have been reported to often be frightened by not recognizing their surroundings, not recognizing family etc. So while their bodies may be healthy, they are suffering. And I have seen mental conditions become worse when patients were taken out of the familiar setting of their home (my grandma was that way).
My heart goes out to any one going through this or needing to make a decision about in home care vs. a nursing home. With my FIL, we are opting for the later. He and our family will be safer (he put a gun to his stomach and also cut himself with a knife and has violent outbursts and is on anti-depressants and diagnosed as paranoid) and our health is such we cannot lift him, which he requires. Will his life be shorted by going into a nursing home? It is anyone's guess. Is it bad if it is? In my opinion, if he has his heart right with the Lord, then no.

To respond to joycews, I was just told this past week by a therapist that people placed in nursing homes do die much sooner than those care for at home. Is it the family members in attendance that give the ill person a reason to keep going? That I do not know, but I do know that nursing home care is not personal or loving, it is just care. I am positive my mother would be gone by now if she was not at home.

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. :)

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.

Butterflygrl, your dad sounds very much like my FIL. My husband has limited visits and to be honest, we can only be around my husband so much if he has to be around his father for any length of time. It is like getting injected with some kind of bad drug. :(
Sad thing is, if it was not for gambling his money away, playing big shot with girlfriends, etc. my FIL has a killer pension. He is 86 years old, took a buyout at his job and has drawn a pension for 25 years. He had one of the kind of jobs they don't make anymore. If he had saved just a percentage of what he earned with his pension, he could have stayed at home and had 24/7 round the clock care with an aid and it most likely would have been enough to do him for the rest of his life. He would have never had to set foot in a nursing home. But he wasted it. His bank account is slowly growing since he has been in the hospital/rehab and my husband and I have looked at his bills and see what really goes out. He has very few regular monthly bills -- the rest has been blown.
I am recovering from acute renal failure and early congestive heart failure and am at high risk for a stoke. My husband is older than me, diabetic and other health problems. We could kill ourselves so he could knock out 90 or more. I could also cash in all our savings and my daughter's college fund and pay for him to be cared for 24/7 at home -- but why should we let him rob my daughter and ourselves when he didn't care to save for himself?
As I mentioned on another thread -- free will is a tricky thing. Your dad and my FIL made all the decisions they did freely. Sometimes you have to pay the piper at the end.
(((Hugs))) to you and your decision.

You make some excellent points Butterflygrl. I think that people live longer at home not only because of psychological reasons but because even the best nursing home is not generally as vigilant as family caretakers in noticing things like an incipient UTI or other illness. Group care is not likely to be as through as 1:1 care. However, there is also the statistic of caregivers predeceasing their patient, something that worries me at the age of 68 because I have high blood pressure and a family history of people dying of heart attacks and strokes in their 60s. We are in the process of getting my husband qualified for Mediciad (much more easily done with a spouse than a parent). Once my husband has Medicaid, I will not wait indefinitely before looking for a decent nursing home because I don't want to end my life this way.

Butterflygrl. I can feel your frustration and anger. Although I am dealing with 2 at the same time with Alzheimer's. I get so angry that I have to make their decisions and run their lives. I have enough trouble running my own. So I won't make this long just know you can vent on here anytime, because I do the same thing. You are in my thoughts and I hope it gets better for you. God Bless You

Thank you everyone. You guys are kind. Right now my father is very angry at me and tells me that "I figured you would turn on me, it happened one time before". I know he really feels this way and that he wants me to know how upset he is and how betrayed he feels but honestly, he will never be able to see it from any other perspective because to me, men don't have to sacrifice much in their lives. They never have to do medical Dr visits where things are put in them with feet up or getting pregnant etc. so he has never had anyone telling him what to do except himself. At this point, if he would have been able to chill out, I would have set up a better situation but I can't get caught with him outside the NH and then refusing to go back in except by force. I really feel bad about it BUT, I have arrived at this conclusion and like I said, I am always having to do things I don't wanna do. He has to walk this part of the journey on his own and deal with it. It may hasten him out but what is the choice. Crappy and crappier. LOL may the force be with us.

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.

Thanks for your support balexander9, I'm hanging back for a bit, maybe go take some respite with Jeanne.

I was also confused by the response to you, whirlpool. I wondered if Ferris thought you were someone else -- maybe even a response meant for another thread about LTC costs. It didn't make much sense to many of us. It seems the odd answer pops up occasionally here and there. I guess that the best thing we can do when it happens is remind ourselves that it is just a bothery ol' support group. You are so welcome here because people like you. No worries.

Butterflygrl, you hang in there and stand your ground, I went through the same thing with my parents, both afraid if they gave anyone control over their assets was not an option to them, now we are working in a hard situation of figuring out what to do. Hang in there girl, lots of us support you. :)

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.