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

Help2day, so glad you wrote about the DNR, my parents have one also, was your Dad at the hospital where the DNR was on record? I wonder if it is like damned if you do damned if you don't for the medical persons, they are trained and taught to keep people alive, but then there is a DNR and they are like caught in the middle. But I totally agree that is what was wanted and was expected from you and your Dad, adhere to it I say, Thanks a lot And have a great day.

What a well thought-out, sensitive post you made, Help2day. My husband, who has Dementia NOS (love those "NOS" non-diagnoses) and Parkinsonism (sort of another non-diagnosis in that it isn't actually Parkinson's Disease per se) in addition to diabetes, was recently in the hospital for what turned out to be cystitis. Once my husband was finally transported from the Geriatric ER to this hospital floor (after a wait of many hours), I got to observe the new intake procedures on the floor. This included checking the patient carefully for physical signs of abuse and asking many questions related to possible abuse or neglect. I am all for that. However, when asked about the patients wishes in terms of heroic life-saving measures I (as Medical Proxy) told the nurse that there was to be a DNR and respirator or feeding tube. (My husband and I had discussed this when he was having one of his more lucid days, although he is not likely to remember that conversation now.) The nurse became very upset and tried to argue with me about these orders. When I held firm, she said "I'll ask the doctor" as though the doctor had the right to override the patient's wishes. I was angry at the nurse for allowing her own person beliefs about end-of-life issues to intrude on the care of a patient who she had just met. Unfortunately, I think this is not as unusual as it should be.

A typo - meant to say "NO respirator or feeding tube".

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.

I have told my children that I do not want to be cared for at home if I develop dementia. I told them that I would rather be in a nursing home, even if it isn't the nicest place, where I can see them for visits but not have to disrupt their lives with the burden of my care, particularly if I become mean and abusive. I also told them that I would not like an heroic measures in that situation - a DNR with no respirator, no feeding tube, no invasive procedures, etc. Only pain medication so that I could be as comfortable as possible. My father, who was a doctor, had written a Living Will to this effect ten years before he died but only my sister, who had witnessed the document, knew about it. When he became bedridden and mental incompetent during the last few months of his life, my sister pushed for more and more tests and wanted everything done to keep my father alive as long as possible. When my father's Living Will was found, all Hell broke loose in the family. My sister still tried to fight for more tests and more treatment, saying that our father would have changed his mind later. She was overruled by the rest of us and my father we managed to get my father released from the hospital where he lived for another 2 months with hospice care that honored his wishes. I think it is very important to honor the patient's wishes rather than for family members to impose their own wishes on the patient, particularly when the patient can no longer advocate for him/herself. It is very selfish to do otherwise.

balexander9..........I agree with all you said 100%, and I feel the same exact way. I just don't know how we will be able to afford the care in a nursing home. I guess we'll be on medicade and be in some horrible place, but I will not put my daughter through any of that!

Thank you, balexander9. To answer downtown's question, my Dad was initially in the ICU of the same hospital where he subsequently passed. He had COPD and at age 80 (he died approximately 1 week after his birthday which was spent in the ER). He entered the ER on his birthday and never came out of the hospital. He went up to the cardiac ICU where he signed his DNR. He was scared, I know, and I tried my best to comfort him after the nurse told me the next day that he had signed it. I told him that it was okay, that he could change his mind at any time if he wished and that everything would be okay. He had been hospitalized for almost 3 months over the summer and this time, I think he knew he wasn't coming home. So when he was basically "stable", he was moved to a "regular" floor and I think I knew in my heart that this was it. His medical binder/folder was moved with him from the ICU to the regular floor, so I'm positive they knew about his DNR.

Because my Dad was never a "talker", I thought it was imperative that my Mom spend some time with him alone in his room. My brother and sister would always want to sit with him in his room all day long during visiting hours and I asked them to please let him sit with Mom for a little alone time. Whether they (Mom and Dad) discussed anything personal between them or not, I'll never know. I just wanted them to have this opportunity to talk if they wished (they had been married for 59 years). I think my Mom thought he was coming home after this particular bout with shortness of breath hospital stay. My Dad died that year (2008) the day before Thanksgiving Day. The Tuesday before (8 days before) he went into the ER on his 80th birthday. His sister (my Aunt) brought up a birthday cake for him and set it on his stomach that day and that was the final picture I have of my Dad. I visited him everyday except his LAST day as I was preparing for Thanksgiving Dinner for the next day (how guilty do I feel is beyond words). I did call him though and spoke with him for a few minutes to tell him that I loved him and I would be there the next day to visit. However, 3 hours after I hung up the phone, I got a call from the nurse's station that my father had stopped breathing and they were doing chest compressions and they wanted to know if I wanted them to continue. I was very angry that they (the hospital staff) put me in that position when they had his DNR order there right before them. It was at that moment I felt so much guilt for telling them to "stop and let him go". Not to mention the overwhelming frustration at the nurses on his floor. During his hospital stay, it was only the caring concern of his lung doctor who told me to call him ANY TIME if I needed to talk. I will never forget that. After my father passed, it was this doctor that sent my Mom a sympathy card for our loss. Such class. I only wish his primary care doctor had that class. He was basically non-existent in his care (but that's a whole other long story).

My husband and I have tried to raise our son (a medical student) with love and compassion and I hope we have passed these traits onto him as he continues his medical education. When he was an undergrad, he spent a semester in South Africa and witnessed himself the need for caring and compassion in this world where people have extremely limited resources for living and medical care. As the population ages and medicine/technology advances, we will see more and more of these quantity/quality of life issues emerge. I told my son that I hope medical schools will be emphasizing these issues and hope they will emphasize the importance of TALKING with family members in a caring and compassionate way about end-of-life issues. I feel so many doctors these days are in it for the glamorous/high income areas (surgery, cardiac specialties, neurosurgery, etc) and doctors who specialize in geriatric medicine are few and far between. There are too few specialists in this area for the fastest growing segment of society (elders). It's a shame. Thanks for listening.....

Not all nursing homes that take Medicaid are awful. Many are places where people paid a lot of money until they had "paid down" their assets to be eligible for Medicaid. It is very important to spend a lot of time looking around to find a place where you feel comfortable that you family member will be well cared for.

Thanks balexander9. I hope that's true. In fact I will probably have to start looking in the near future, because after over 3 years of paying $4100.00+ at the AL my mom's funds are getting very low. Scary.

We know you can put one partner into the nursing home with Medicare, Medicaid, Soc. Sec and so forth and the other can keep the money as long as it is under $100,000 in property and assets and can only have $2,000 in bank account, think it is called the poverty law. And if you can get assets put in an account not in their name for 5 years before having to put them into the facility, they can go in on Medicaid and Soc. Sec.

The five year "look back" doesn't apply to spouses. See an Elder Law attorney who can take care of everything for you.

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 don't know if I wrote this already but the care team at my dad's NH explained to me that the DNR is for if they walk in and his heart has stopped. It does not apply to if they walk in and he is in cardiac arrest. They will do CPR on him then and try to save him. I think there must be a technical meaning to resuscitate. They explained that it was a common misconception. That turned out to be exactly what my dad said he wanted. He said not to try if he was gone but if he was arresting, to try. I do think it's common to think the DNR means "just let me die".
Anyway, I was at the NH yesterday for a care meeting and I saw the elderly ladies sitting there watching TV. All lolling about in their chairs. One lady in particular was clearly in dementia. She was just drooling and would occasionally start sort of sobbing to herself as if she was crying about something inside of herself. Then she would stop and I just thought that if I was like that, let's just say that I don't want to be like that. I am going to make it clear that I want to be put out of my suffering. It prolly won't work but I can try.
I read about a couple who went to Sweden to cross over together because one got diagnosed with a terminal illness. They wanted to be together. Then there is the man who walked into his wife's NH and shot her. He is being tried now for murder when he was probably doing it because he loved her. Who knows of course but anyway. There is a company in Sweden that does compassionate care like this. I wish we would treat ourselves as well as we treat horses when they are suffering. I think it's all this religiosity that makes people so terrified of dying. Plus the unknown. Going to burn in hell etc. I think we need to view death differently instead of trying to hang on to a last little thread. IDK. I know it's sensitive. Oh yes, I read this book once called "Like water for chocolate" which is about a girl youngest in her family and her mother expects her to sacrifice her whole life to take care of her at the end of her life. It's a great book and a not so great film.