I had unrealistic expectations regarding end of life visitors

[Anonymous]

Anonymous wrote:

Anonymous wrote:It really takes an extraordinarily person to visit someone with severe dementia. It makes them face their own mortality plus it’s super depressing and you wonder if it even matters.

My aunt’s BFF has Alzheimer’s and I know she visits fairly regularly. Her mother and husband also had Alzheimer’s so she knows the drill and I think has managed to emotionally steel herself against it, or find some way to deal with it. But most people are just too upset by it to deal with that.

This. If you father has advanced dementia, really what is the point in visiting someone like that? I dread going and seeing my own mother like this. I told my kids I would rather die alone that force them and/or their children to visit me if I am just a shell of a person who can no longer function. So friends are supposed to go gather around his bed and do what?

Sometimes they benefit from the social interaction even so. Daytime activities can help them stay on the right sleep/wake pattern. You are also there to bring whatever the caregiver finds helpful (groceries, dinner) and to be with the person so the caregiver can get a bit of a break and some social interaction for themselves. That's why I go.

[Anonymous]

Anonymous wrote:I'm not surprised at all, OP.

I saw this with three of my grandparents. Even if they still had living friends, they were all too depressed/ill/impaired/far away to visit.

My MIL is in a very long-drawn out Parkinson's, has reduced mobility, and even though she has all her wits about her, she can't talk very well and can never be sure how she's going to feel, physically, from hour to hour. Friend visits are not happening.

This. I’d only be surprised if a sibling didn’t visit, but even then it would be highly dependent on their health.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It really takes an extraordinarily person to visit someone with severe dementia. It makes them face their own mortality plus it’s super depressing and you wonder if it even matters.

My aunt’s BFF has Alzheimer’s and I know she visits fairly regularly. Her mother and husband also had Alzheimer’s so she knows the drill and I think has managed to emotionally steel herself against it, or find some way to deal with it. But most people are just too upset by it to deal with that.

This. If you father has advanced dementia, really what is the point in visiting someone like that? I dread going and seeing my own mother like this. I told my kids I would rather die alone that force them and/or their children to visit me if I am just a shell of a person who can no longer function. So friends are supposed to go gather around his bed and do what?

Sometimes they benefit from the social interaction even so. Daytime activities can help them stay on the right sleep/wake pattern. You are also there to bring whatever the caregiver finds helpful (groceries, dinner) and to be with the person so the caregiver can get a bit of a break and some social interaction for themselves. That's why I go.

Usually there is hospice staff so the caregiver is free to go. That has been my experience. As others have mentioned, when it's a younger person you are more likely to have more visitors. When it's the end of the lifecycle sometimes peers are ill themselves and sometimes they prefer to preserve their memories of the friend as healthier and happier and it's too painful. Regarding siblings, with parents living so long often they have their own health issues or emergencies or sometimes due to family dynamics and issues they don't go. I was glad I could be there for my dad through the whole process of aging including death, but we also had a healthy and pleasant relationship and I knew he was ready and lived a long and fulfilling life. My brother and I made sure we spent time with him before our chaotic sister came to town to say her goodbyes so we could avoid any dramatics. Seeing him so uncomfortable and unable to do anything independently just helped me be at total peace when he passed.

[Anonymous]

You must all be watching different movies than me. I've never seen a movie where everyone gathers at the dying person's bedside.

[Anonymous]

My mom has one good frond who still calls even though she makes little sense. But my brother hasn’t called my mom (with dementia) since thanksgiving . (Also hasn’t called me to find out how she is—-I moved her across the country to care for her because I knew he wouldn’t but I thought he would at least check in, given that I’ve taken everything else off his plate.

[Anonymous]

Anonymous wrote:My mom has one good frond who still calls even though she makes little sense. But my brother hasn’t called my mom (with dementia) since thanksgiving . (Also hasn’t called me to find out how she is—-I moved her across the country to care for her because I knew he wouldn’t but I thought he would at least check in, given that I’ve taken everything else off his plate.

Does she by any chance have a strong reaction to your brother? I was very involved with mom until she decided I was the devil. My existence agitates her. I outsourced and am way less involved than I expected. We used to be close, but then for some reason I became a trigger for explosions. I think it's best for both of us that I maintain distance. She explodes less (unless someone else accidentally triggers her) and I don't weeks and a therapy session or 2 to recover. For those who say it's the illness-yes and no. Somehow, they know the exact insults to use to pierce you and I have pretty thick skin.

[Anonymous]

Anonymous wrote:I’m sorry op, but I would think it very intrusive to have people come visit in the end. If your dad has had dementia for years, then he’s been basically gone for a long time too. People probably said their goodbyes and grieved slowly over the years.

It is indeed intrusive.

I had to intervene to keep my ILs from visiting my mom in memory care.

[Anonymous]

If you have friends who are the same age and siblings visiting you, it probably means you died pretty young relative to your life expectancy. When my dad got sick, his best friend and his siblings came to visit (some from the other side of the world), but that's because they were all still very well and he died earlier than his peers.

When my grandma got sick and died, nobody in her generation came as they all had died or were too sick/old/frail to travel.

[Anonymous]

My mom is not near the end yet, but has alienated most friends and family over the years with her dementia - she's aggressive and confrontational. I would not be surprised if she has few visitors when the time comes, even though she was quite loved in her community before her personality completely changed due to disease.

[Anonymous]

Read Briefly Perfectly Human by Alua Arthur. She works as a death doula. It is very eye opening, most people only have their family (if that).

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:It really takes an extraordinarily person to visit someone with severe dementia. It makes them face their own mortality plus it’s super depressing and you wonder if it even matters.

My aunt’s BFF has Alzheimer’s and I know she visits fairly regularly. Her mother and husband also had Alzheimer’s so she knows the drill and I think has managed to emotionally steel herself against it, or find some way to deal with it. But most people are just too upset by it to deal with that.

This. If you father has advanced dementia, really what is the point in visiting someone like that? I dread going and seeing my own mother like this. I told my kids I would rather die alone that force them and/or their children to visit me if I am just a shell of a person who can no longer function. So friends are supposed to go gather around his bed and do what?

Sometimes they benefit from the social interaction even so. Daytime activities can help them stay on the right sleep/wake pattern. You are also there to bring whatever the caregiver finds helpful (groceries, dinner) and to be with the person so the caregiver can get a bit of a break and some social interaction for themselves. That's why I go.

Thank you for going. I wish I had a friend like you. Signed, Caregiver

[Anonymous]

My dad had a couple of friends who visited consistently and a couple who didn't. I appreciated the friends who did, but didn't blame the friends who didn't.

[Anonymous]

Anonymous wrote:

Anonymous wrote:It really takes an extraordinarily person to visit someone with severe dementia. It makes them face their own mortality plus it’s super depressing and you wonder if it even matters.

My aunt’s BFF has Alzheimer’s and I know she visits fairly regularly. Her mother and husband also had Alzheimer’s so she knows the drill and I think has managed to emotionally steel herself against it, or find some way to deal with it. But most people are just too upset by it to deal with that.

This. If you father has advanced dementia, really what is the point in visiting someone like that? I dread going and seeing my own mother like this. I told my kids I would rather die alone that force them and/or their children to visit me if I am just a shell of a person who can no longer function. So friends are supposed to go gather around his bed and do what?

Are you serious? Why not take them out back and shoot them then? They benefit by being touched by someone who loves them. They may not know you but they may feel safe with you. They benefit by having something a little different in their day. You would benefit by growing a bit.

[Anonymous]

Anonymous wrote:PP and my BIL made a rough decision NOT to see or visit his mother after she was placed under palliative care. He said he could not endure the emotional distress and so with his siblings’ support said he’d do all of the funeral arrangements and estate transactions.

What a sneaky b-rd, I’d love only the easy parts too!

[Anonymous]

Anonymous wrote:I think a lot of people are unrealistic about this. My parents are living it right now. Their friend group is in failing health because they're all of similar age (early part of the baby boom) and they all stupidly thought they wouldn't grow old, they could live in a snowy rural area forever, and that they would take care of each other. Well guess what, they're all old now, some of them are sick and others are dead, and their adult children have left the area and are overwhelmed just trying to care for their parents and have no time for their parents' friends. A few of the wives are younger, but not necessarily healthier, and not necessarily interested in providing a lot of support to anyone they aren't married to. Probably like 10% of the people are net caregivers, the other 90% are net recipients of care, and it's just not working. Maybe when some of the sickest people die or move away to be near their adult children, it could improve. But in general the whole system doesn't work, like anyone not in denial could plainly see.

I wish more adamantly child free ppl could read this. No amount of friends is doing to save them at the end