Parent's with dementia or Alzheimer's being kept alive through medicine with no quality of life?


I was speaking to an elder care lawyer about some of the hardest issues families with an aging parent face, and she spoke about families dealing with the constant care of an elderly parent whose life extends far beyond their being able to enjoy it. Especially with advances in medicine, it is possible to keep seniors alive, even if they are bedridden or vegetative. Are any of you struggling to cope with the long term care needs of an aged parent who is dependent to the point where they have a poor quality of life, but they still receive flu shots or have a pacemaker that is extending their life? Is this difficult? Is it an issue that you wrestle with, knowing what the right thing for an elderly parent is? Do any of you have custodial issues with other siblings or a government guardian as a result?

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Mom at 93 says she wants to live to 100 - she thinks she's in her 70s
She is in pain from compressed vertebrae and arthritis
She takes a BP pill a blood sugar pill and now an anti- psychotic
Since her move to memory care 9 months ago she's had at least a half dozen UTIs
Mention going out to dinner though and she's still raring to go

Many years ago she wrote that she did not want to be kept on a machine if brain dead - that's an easy decision - it will be all the other ones that will be gut wrenching

I thought my mother wouldn't last long after her doctor discontinued half of her meds including an anti platelet, cholesterol and 2 bp meds but I was wrong. Should we also discontinue the aspirin a day even though her atrial flutter could produce a debilitating but not fatal stroke? What about the med that controls her headaches and essential tremor but also lowers her bp? What if I just stopped all the laxatives she needs to function halfway normally? For that matter what if I failed to prepare a modified diet and thicken her liquids, if I stopped spoon feeding her and left her to eat what she could manage on her own? Where is the line, and when is it crossed?

A friend of mine and I were just talking about that regarding our brain's future. She felt the same as I did, if we can't continue to be a valuable source to society, then we wish we could pull our own plug. Neither she nor I have any children, so it might be different if one does have children and grandchildren.

My parents did volunteer work at a regional hospital up into their late 80's and early 90's... they stopped once my Dad could no longer drive. But they were happy being very elderly, as long as they could enjoy Sunday football, Masters Golf, NASCAR, they were happy campers. But on the other side of the coin, I was the one who was exhausted, stressed out, sleepless nights, as my parents continued to live by themselves. "We can manage" was their main answer.

My Mom had a serious fall which gave her last stage dementia, thus she lived for 3 months in long-term-care before passing. So sad. Her mind was so befuddled, example her brain thought she could walk, but she couldn't so she fell all the time. I hated seeing this once active woman of 97 be this way. Three months was three months too long for her since we knew no one would repair this damage.

My Dad was just starting his journey with dementia, mainly with sundowning. It was so hard for me to wrap my brain around how confused this once brilliant man was... it took me awhile to learn to play along... then he passed way too quickly. Or maybe not, he knew his mind was playing tricks on him.

Back when Mom was a little more , well.... "with it", I asked her to start to consider what her wishes would be. She told me that she "is not done living yet" and would want me to fight to prolong her life.

At this point, this is the extent of her advanced medical directive to me (verbal only)

She has mild dementia and refuses to focus on difficult issues (not a new behavior). While we don't have any big medical crisis right now, she does battle frequent UTI's and is on about15-20 maintenance medications.

What I am having trouble dealing with is her complete lack of ability to show pleasure. She does nothing all day. She naps as often as we let her. Is in bed by 9 and has to be woken up or she would sleep the day away. She will not take up any of her old hobbies or any new ones. She never wants to bother doing anything that gets her out of the house. If we could find a way to accomplish her bathrooms needs she would likely be just as happy never getting out of her recliner again.

What is the quality of life? I would not want this life. I have told my husband that if anything ever happens to me and I can no longer experience joy or happiness or find humor in anything, plug me into something and then pull the plug.

Sadly, Mom refuses to revisit the issue of an advanced directive and if I could talk her into talking about it, she would probably choose heroic measures.

"live beyond their minds" - I like that. Its a good way of putting it. I'm going to steal it.

I am POA for my cousin who as severe dementia. She receives Palliative Care. We try to keep her comfortable and as content as possible. We try to maintain her quality of life as best we can. It's a case by case thing, imo. Flu shots are needed, but invasive procedures would not be. I think that working with the Primary who is familiar with Palliative Care is helpful.

My cousin made her feelings known about issues like this long ago, so I don't struggle. I know what she wanted. She has always been clear about it.

I have had no inquiry about my cousin by other family or friends for years. It's sad how many people cannot deal with dementia. In their minds, it seems she's already gone.

You ask very good and very tough questions. I have not personally, but being the sandwich generation have had friends who have dealt with these issues and sibling disagreement is common. Some want to extend life at all possible measures while others are thinking that with quality of life / awareness of life gone - ease up and let nature take more of a course. Several had to work with social work mediators to get the family on the same page - lots of emotion involved. Our elders didn't expect to live beyond their minds - this seems to be the first generation to have to deal with this - so many of them don't seem to have made their wishes known. I guess I'm trying to say - let us put in place directives / living wills etc and make our wishes known to our children so they don't have to deal with such grave decisions. Good luck!!

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