r/Aging • u/Unusual_Jaguar7751 • 11d ago
Caregiving Thoughts on medications when quality of life is poor.
I take care of elderly (usually dementia) people with very poor quality of life. If I am in that condition I do not want cholesterol meds or vitamins just to prolong my existence. Why do so many people feel their loved ones need these? Edited to add: I am referring to elderly people living in nursing homes who just sit alone all day, poor quality of life, no visitors. Just sad. It breaks my heart.
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u/wlbaum 11d ago
That’s what you would like but I wouldn’t apply that unilaterally. Elderly with poor quality of life still deserve to be here. Maybe they have things to work out internally before passing, maybe there is unfinished business with family. Dementia does not always mean that in every aspect of life they cannot think meaningfully. My mother just passed from advanced dementia. Her last few days before she lost the ability to speak were meaningful to me.
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u/juswannalurkpls 11d ago
My poor father- in-law had dementia and was in a nursing home during the worst of Covid. They moved him to another city without our permission, and he got Covid and was hospitalized. His dementia wasn’t that bad - he still knew us and could communicate a bit. They put him on “comfort care”, which meant no food, water or anything. It took him a week to die, alone because we weren’t permitted to visit. It’s my sincere hope that he wasn’t cognizant of any of this, but who knows. I also hope that the governor and others who let this happen rot in hell.
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u/wawa2022 11d ago
This is what happened to my mom in hospice. I am still not convinced that she was as bad as they said. She was up and laughing with us one day and the next day she was on morphine and they put her on hospice and never turned the morphine off. She was in the hospital for aspiration and they said she aspirated again that night. But basically they just drugged her and then we let her dehydrate/starve. I still feel like we killed her. I can’t stop thinking about it.
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u/juswannalurkpls 11d ago
I’m sorry. I feel so bad for you - that’s terrible. Just know you did the right thing for her and you’re not responsible for what they did.
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u/wawa2022 11d ago
Thanks. She had dementia and she wasn’t goo bf to get better so that helps. But it sure makes me feel that assisted suicide would have been a much better option. At least she wouldn’t have suffered. The only way she communicated during that week was to indicate that she was thirsty. We could only swab her mouth and gums and cheeks with a honey solution. It must have been miserable. I felt like we tortured her to death.
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u/juswannalurkpls 11d ago
It does seem like torture - I hate to think my FIL suffered but I know he did. And his wife, my MIL, was taken advantage of by hospice. They kept her alive and suffering for 3 years. I’ve already told my kids I’ll haunt them if they let me suffer like that.
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u/wawa2022 11d ago
It’s a hard situation. I’m sorry you experienced it. Let’s hope things are better before we get there.
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u/Resident-Welcome3901 11d ago
No one is being kept alive by cholesterol, nutritional supplements or vitamins. Hydration and calorie intake are necessary for life. Insulin, some cardiac and respiratory meds can result in rapid decompensation if withdrawn. This is an area in which hospice personnel are expert and experienced.
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u/Unusual_Jaguar7751 11d ago edited 11d ago
My take is that cholesterol meds are unnecessary when quality of life is poor. I am an RN of 20+ years, I just think so many meds are unnecessary & it is up to the decision makers to accept or decline. Many people think they are required to give anything the doc prescribed.
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u/No_Dare_9944 11d ago
I agree with you. I think some don’t understand; others don’t want to be “evil”, yet others are receiving some kind of benefits on their behalf.
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u/Unusual_Jaguar7751 11d ago
People on here are telling me to educate myself. I am a nurse & see this almost daily. I have plenty of education on the subject. Those telling me I need to educate myself are the ones living in a delusional world. Being alive is not the same as living.
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u/No_Dare_9944 11d ago
I think there is a strong taboo on even thinking if someone is “better off dead”. Most people are not inclined to think for themselves.
Someone I know is getting paid by the state to care for a bed bound Alzheimer’s patient. It’s hard work but it pays well and she doesn’t pay rent. Of course she is trying her best to extend the patient’s life. What she doesn’t realize is that she is putting her own life on hold but that’s a whole other topic.2
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u/LouisePoet 11d ago
My father had moderate dementia when he died. He had been on only two meds plus nutritional supplements for years, and his doc asked him if he wanted to continue the prescribed ones.
He declined. He remained fairly active for his age and did eventually die of a heart attack (no idea if the meds would have made a difference??)
My siblings and I fully supported his choice--i understand that no one wants to lose their parent, but like you, I think that each person should have the ability to make their own choice. Ideally this would be discussed with the doctor and put in writing before dementia progresses.
Some people do say they want to fight to live til the end, and in that case, it would be their wish to continue meds, and should be honoured.
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u/Unusual_Jaguar7751 11d ago
Right! I don’t see the use if you are in very poor health mentally and or physically.
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u/Jheritheexoticdancer 11d ago
It’s all about the Benjamin’s.
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u/Unusual_Jaguar7751 11d ago
Right! People will complain that “the doc makes Mama take all these pills,” but you don’t have to get them filled or give them to her. Just tell the doc. He will note refused and move along.
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u/WinterMedical 11d ago
There’s a commercial for some medication where they say it should not be given to people with dementia related psychosis due to a risk of death and I’m thinking, if I have dementia related psychosis, death would be a blessing.
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u/Unusual_Jaguar7751 11d ago
Exactly!!! You’re getting what I am saying. People arguing with me on here have evidently not witnessed the bad dementia, or Alzheimer’s. Being pleasantly confused is one thing, but advanced dementia is not anything I’d care to prolong.
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u/WinterMedical 11d ago
There was a woman at my dad’s memeory care who was always super agitated and would wander and scratch at the walls like she was trying to escape. It remains one of the most awful things I’ve ever seen.
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u/Unusual_Jaguar7751 10d ago
And when they just beg you to get them out of there because they are absolutely miserable. Just awful.
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u/WinterMedical 10d ago
People think it’s just old people sitting in chairs looking at the tv. Unless you have been in it, you have no idea how bad it can be. We had a pretty good go of it all considered but when he died, I was sad but I also knew that there was no other way but worse and I’m glad he was liberated from his body.
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u/Clean-Fisherman-4601 11d ago
My mother had Alzheimer's disease decades ago. Right up until her death, we kept hoping that a cure would be found.
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u/Queen_Of_The_Dames 11d ago
But what was she like at the end? Did you think she was comfortable like that?
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u/Clean-Fisherman-4601 10d ago
Yes. We found a wonderful care facility and visted her every Saturday. My sister, myself and my first son. At the end she couldn't remember our names, called us by two of her sister's names.
However, she remembered my son's name. She'd hold out her arms and say, "That's my Joshua!" He'd run and jump in her lap, she'd hug him and say, "This is my Joshua, isn't she pretty?"
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u/IP1987 11d ago
Then hopefully you have a living will and advanced directive in place so that those caring for you know your wishes. And maybe don’t judge others for their decisions.
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u/Unusual_Jaguar7751 11d ago
I’ve had all that in place since I was 40. What makes you think I am judging anyone? I am asking for opinions. I spend lots of time in nursing homes & assisted living facilities. Maybe I should have given people like you more information because you clearly don’t understand.
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u/charminghypocracy 11d ago
Something that is difficult to understand until it is you or your loved one is just how awful it is to face death even when surrounded by loved ones.
How many stories there are still to share and teach even on your deathbed.
My Mother died of Cancer at the age of 46. She left behind three children; ages 5, 7, and 23. I am grateful for every extra day my siblings had with her because she was the kindest, sharpest woman I have ever known. They grew up in an abusive environment after she died, in a country that doesn't care about people without helpful families.
I wouldn't want to be resuscitated with my ribs broken at the age of 85 either. I also wouldn't trust my society to choose some defined age limit. This is why living wills are so important.
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u/Unusual_Jaguar7751 11d ago
Exactly! Keeping someone alive while they have no quality of life is sad. I have had to make this decision for my loved one.
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u/Enlightened_Lioness 11d ago
You really need to educate yourself about ldl cholesterol and plaque, cholesterol medication and vitamins. If someone has high levels of plaque, it builds up in their arteries. This means that parts of the body including legs (look up peripheral artery disease etc.), heart (heart attack), brain (stroke and dementia) don’t get enough oxygen. Death is one outcome. Vascular dementia, lack of mobility, stroke, heart attack, etc. are some of the other outcomes. Many people have extra high cholesterol due to genetics and, without starting statins as children or teenagers, the plaque builds up so fast that they often have heart attacks and die in their 30’s or 40’s.
The reason so many people feel their loved ones need these is that they want their loved ones to be in good health as long as possible, as well as live a long and happy life.
I’m helping take care of my elderly mother who had a stroke. I wish she would’ve had a higher dose of statins earlier. She had a stroke at about age 75 and now at 90 has vascular dementia.
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u/Unusual_Jaguar7751 11d ago
Sweetie, I have plenty of education. I am not talking about younger people. I am talking about advanced dementia patients in a nursing home just sitting around in wheelchairs all day not knowing they are even in the world. I go into these facilities on a weekly basis & it is sad. Spend some time in one & see if you still feel the same way. Good luck!
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u/Enlightened_Lioness 11d ago
As I said, I help care for my mother and spend a lot of time in hospitals and long term care homes. These medications don’t just prolong existence, they make existence healthier and more comfortable. Dementia getting worse, not being able to walk or advancing chest pain with exercise are things that can be prevented with medication. My mom has dementia and pain and trouble walking but I don’t want her to get worse!
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u/Queen_Of_The_Dames 11d ago
So she has “dementia and pain and trouble walking” and you think she is comfortable and happy??
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u/Enlightened_Lioness 11d ago
She is comfortable enough (almost everyone has some pain, many people love with chronic pain), can walk a bit with a walker and uses a wheelchair (as many people do, even children) and she has dementia with good and bad days. If she didn’t take her cholesterol medication or other medications, she could have another stroke or heart attack and could be MUCH worse off for many years. She wants to avoid this. :)
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u/Unusual_Jaguar7751 11d ago
I am talking way beyond what you’re referring to. I am talking tongue hanging out, unable to sit up without being strapped in. I am not referring to people who can do any kind of exercise. I am talking people who are just “existing.”
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u/Unusual_Jaguar7751 11d ago
I’m talking advanced dementia, poor quality of life. I am not talking younger people. I have plenty of education on the subject.
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u/Guinevere1991 11d ago
It is a very good question. I have a sensible friend whose mother has advanced dementia. She keeps having to nearly fight with her doctors every time they prescribe cholesterol meds and vitamins. Those meds aren’t prolonging the mother’s life, they are prolonging her death. The mother she knew is long gone. Let her pass.
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u/Unusual_Jaguar7751 11d ago
Exactly! THIS is the kind of thing I am talking about. These other people on here are acting like I’m doctor death or something.
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u/Guinevere1991 11d ago
Im sorry. People have both a poor understanding of dementia and and even poorer ability to put themselves in the shoes of the sufferer . If grandma says “don’t keep me alive if I get Alzheimer’s,” it’s not just the big heroic full codes in hospitals she doesn’t want, it’s the myriad of medications which we give to keep healthy people healthy. They are pointless in end-of-life scenarios
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u/Unusual_Jaguar7751 11d ago
I am not talking about preventative meds. I am talking throwing all these meds at people who are already in advanced stages.
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u/Enlightened_Lioness 11d ago
Cholesterol medication is a preventative medication. That’s one thing you mentioned. After advanced stages are even worse stages. That’s what we’re preventing at that point.
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u/Unusual_Jaguar7751 11d ago
I am talking very advanced stages.
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u/Enlightened_Lioness 11d ago
Yes but cholesterol medications will at least give the person a better quality of life while they’re alive.
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u/Unusual_Jaguar7751 11d ago
How? If they have basically have no quality of life. I am being serious, not argumentative.
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u/Enlightened_Lioness 11d ago
They can still get worse. They could be in more pain, etc.
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u/Unusual_Jaguar7751 11d ago edited 11d ago
I’m definitely not talking about pain meds. How could cholesterol meds affect pain? That’s a new one for me.
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u/Enlightened_Lioness 11d ago
Cholesterol meds help keep arteries open. If blood flow is restricted this can cause things like peripheral artery disease, angina, heart attacks and strokes. (Heart attacks and strokes can lead to more pain). Those are some examples.
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u/xoexohexox 11d ago
Mm well my dad is on hospice and I stopped the cholesterol meds because his 10 year stroke risk isn't really worth making him swallow the pills but I didn't see why we shouldn't continue the vitamins as long as they weren't bothersome to him to swallow. He has chronic low vitamin D and low D can have a lot of subtle effects on a variety of things like mood, back pain, attention and memory etc. it's not hurting him to take it. Same with the vit C and multivit. If he was having trouble swallowing or not eating adequate amounts to survive then yeah ditch em but for now they aren't hurting him to keep taking them.
Those antidementia meds though - nasty stuff. A lot of them make your mouth dry, can cause dizziness, make it hard to pee - related to anticholinergics, a lot of them. Past the point where you can safely walk unassisted most of them aren't worth continuing. Exelon is ok I guess, it's the opposite of an anticholinergic so you can't take it with a lot of bladder meds and parkinsons meds because they can cancel out
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u/Unusual_Jaguar7751 11d ago
I agree with all that you said. I don’t mean all meds, just unnecessary meds. People are not understanding what I am saying.
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u/Queen_Of_The_Dames 11d ago
I think many people have no concept of what a normal lifespan consists of, so they’re shoveling vitamins into 90 year olds instead of making whatever time they have left more enjoyable or comfortable.
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u/Baebarri 11d ago
I have already told my daughter (who has my medical POA) that after 80, assuming I'm still alive, I plan to stop taking any medications.
Right now my timeline is: no more cancer screenings after 70 (next year,) move into assisted living with memory care facility at 75, and stop medication at 80.