So I'm wondering how common is it in the current time that most people will have an extended period of years before death where they require caregiving? I know this site is devoted to caregiving so it looks like 100% of the time but this is a self-selected group. A few years ago my insurance agent was trying to talk me into insurance for this, but even their best very expensive policy only covered three years in a nursing home before it gave out - it hardly seemed worth it. Have things changed from how they used to be, say 20-30 years ago? Did the end of life always become this extended lingering situation?
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.
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.
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.....
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.
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.
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.
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 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.