I realize you likely mean your comment as a kindness and I appreciate that intent.

However, as the son of a mother who slowly died from early onset dementia, I can attest that just because the ego self has fractured and scattered into a million pieces does not mean that the afflicted person is in some peaceful state of not knowing. That they are somehow not suffering or in pain. It is just that the afflicted can no longer articulate their suffering in ways understood by the rest of us in consensus reality. If one pays close attention, the reality of their suffering is bright and clear.

One of many many examples was when my mother would compulsively pick up a pen and make rhythmic circles on and off for hours. I would watch her and wonder why. Turns out she had a severe (brutally painful) urinary tract infection and was trying to soothe her pain. She was a much beloved English teacher and writing was her refuge. She was doing her level best to alleviate her suffering.

The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality.

I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients.

> The thought that a person dying from Alzheimer's is not having a painful existence is radically disconnected from reality.

While I understand your point I think you're talking from a perspective of the other extreme, the one where there indeed was a lot of pain but the person couldn't communicate it. Still, Alzheimer's itself mainly works in your head and it's probably more likely to assume that in most cases caregivers will have at least some means to see if patients are suffering.

The person you're replying to does probably have a lot of experience with sufferers, although, obviously, he also just states his anecdotal experience.

> I respectfully ask you and any caregivers for dementia patients to avoid conflating your own understanding of reality with the actual reality of your patients.

IMHO this would not help, but maybe even create a bigger gap between patients and caregivers. We are humans in the end, and the only thing we can do is to try our best to give them the best care and make the rest of their lives as good as possible. I think, what makes the difference, is being aware that any patient with Alzheimer's or some other kind of dementia could be in a position of not being able to communicate their pain in any way. But it doesn't help to generalize this, stopping to trust your feeling and assuming the worst.

That said, I’m truly sorry for the loss you experienced, and I hope you and your family find some measure of peace. I know how it feels. I hope I don't sound too rude or harsh, it definitely wasn't meant in that way.

You nailed it with this comment. Yes I was giving a generalized statement. I do believe the majority of patients are blissfully unaware and not suffering. They laugh and joke and tell the same story they enjoy telling over and over lol. There are some cases where they seem scared or panicked. In those cases you work on routines that they can fall into and communicate with the doctor and if possible use medications to make them more comfortable.

I worked in a advanced dementia facility for years. Ops mom having undiagnosed UTI is unfortunate but in facility it is much easier to spot for those who are experienced. The frequency of bathroom trips and believe it or not you learn the smell of a persons urine and bowel movements. So when things smell off you investigate.

I can't say I know exactly what the patients are experiencing but I have had years providing care for dementia patients and a huge part of that is family members. I really teach them about burnout and not to feel guilty asking for a break. I praise them for what they do. I am watching family members just as much as I am the clients (I am currently not in facility but work out in the community). Many of the family members are elderly also so may lack full understanding of everything. If they are crying or yelling things like that I discuss with the team strategies how we can make it easier for them.

So much to say here but your comment hit a lot of very good points. Many people genuinely care and want to help. Nothing is perfect and some cases are very hard to manage. I too am sorry to hear op struggled with his mom it is one thing to see it in a client and another to see it in a family member. I wish anyone experiencing it the best.

I am sorry to hear you had such an experience with your mother. Of course I made a generalized statement and that can not be true for everyone. There are also multiple types of dementia and dementia like conditions. Some forms do leave the person confused and scared and calling out and in rough shape for the caregivers perspective. But in general the vast majority of the clients I have worked with did not appear to suffer or be aware of their situation. I worked in an advanced stage dementia facility for almost 8 years.

When a population can not express what is wrong yes sometimes health issues get missed like your moms UTI. But with a lot of experience those things get noticed much faster. Having worked with someone for years as many clients did stay with us for years you get to know their routine very well. Suddenly they are using the bathroom non stop you question UTI. They suddenly start acting very strange - check for UTI. The system is not perfect but there are people out there that care and are doing their best to help those. I advocate for my clients and use my experience and knowledge to help these people get into the best situation possible.

When working with dementia patients you are not just working with the client but his family as well. I currently work in a community setting so see people at home and when I see the wife crying or yelling at the client I sit and ask how they are doing. I let them know that they are a good wife or husband and that getting upset does not mean they are bad. I then tell them that it is however important to recognize when they are burning out and getting frustrated. Thankfully for most of my clients there are services that can let the family get a break. We will do respite visits and the family can leave the house and get some errands done or just have lunch or relax. In those upset moments I help them through the situation and then discuss it with my team to try decide how to best help. Sometimes that means increased service. Sometimes it means they go to a respite facility for a week. Sometimes it even means they get placed into long term care facility.

I am drifting off on this post so again I am sorry about your mom. Dementia is cruel. Care is not perfect. But I genuinely feel for the majority of those who have dementia they just lack much insight as to what is happening.

Thank you for such a thoughtful, considered – and considerate – response. I appreciate your diligent attention to what is surely a highly demanding job. Thank you for your service.

Thank you for your expert insight though I must confess--if this was meant to be reassuring it has the exact opposite effect... A disease that makes only your family suffer, wow. I thought cancer was bad.

To be fair, death seems pretty much the same.

That is, it's not the dead that are in pain, it's those left behind.

So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering.

For example, if my dad lived long enough and ended up with it, had I been convinced that he actually wasn't suffering, it may be less heartbreaking as his son (but still heartbreaking for my personal loss of the relationship with my Dad, and him not knowing me).

It's hard for me to say, having not had someone super close end up with it -- only more extended family. So those closer/more affected may have other thoughts.

> So, while I agree with you, it doesn't seem much worse than death, especially if the family accept/believe that the Alzheimer's patient is actually not suffering.

While I agree that it’s not much different than death, it seems painful to know that family suffers the loss of the same person essentially twice

> it seems painful to know that family suffers the loss of the same person essentially twice

Speaking from second-hand experience -- that is, seeing my father experience the loss of his aunts/grandmother "twice".

One of his aunts was like a mother to him (his mother passed when he was 2, his father when he was 21). I feel that he really only suffered the loss once: when she succumbed to Alzheimer's.

The loss was mostly grieved then, and by the time she passed, he had already grieved. I'm not saying her death wasn't hard. But in a lot of ways, I feel like there was as much relief and peace, as there was suffering from her death. By the time of her death, she had been long gone anyway.

Of course, everyone is different, and every loss/Alzheimer's diagnosis is different. But it seems like you can lose someone you love in a number of ways, and often multiple ways, before their ultimate passing. And each one of those partial losses seem to add up to ~a single loss of mourning/grief, rather than experiencing full grief for each one.

Another example is simply having geographical distance from a loved one. Moving away (or them moving away from you) can result in experiencing (grieving/mourning) a loss. And then once they pass, you've already partially grieved, and the additional grieving is lessened from already having been distanced from them (vs. other loved ones that still live close, and grieve more from having them a part of their lives more frequently).

Again, this is just from my experience/observations from seeing how those close to me have grieved. Others may feel differently.

How would you know the difference between a lack of pain and a lack of ability to communicate it to you?

The end stages are not great for the individual or the family.

Neither are the gradual decline before that. At least there can be time to prepare for the inevitable.

sounds an awful lot just like people on the spectrum (note: that includes me)

imho everyone is on the spectrum, it's just a question of where (and possibly when)

When I went through this with my grandmother, I experienced that too. Like others said, it's important to note that in the later stages it may be hard for the patients to communicate their pain, so we cannot be sure, but at least in my anecdotal experience I would say that I can be pretty sure there was no acute pain involved.

The most important thing for me and others around her was to just vibe with her reality. Just give her the space. Not be mad, but laugh or help, again and again. Like you would do with a baby. Don't expect them to learn, don't expect anything.

Until the very end I think she had a good life. The end, obviously, will have been hard for her, because that's a time where they cannot even live their own little life anymore but probably experience higher pain in general, but that's what it is.

They have plenty of time to suffer between diagnosis and not being able to be aware of the world at all though. Dad had years of depression due to the gradual decline before being incapable of communicating.

My grandfather had Alzheimer's. My grandmother dementia.

My grandfather would, not uncommonly, escape from his care home. He'd be found, miles away, trying to "walk back home" -- and, despite his deterioration, he knew the routes, he was walking the right city streets to get to the right country roads, etc... He wanted to "get home" and make sure his garden was being tended to. Sometimes he'd have shit himself, or pissed himself, but had been walking for hours regardless. That isn't a painless existence. Through what I know of his experience alone, I've understood this to be deeply traumatic.

And my grandmothers experience was something else entirely. I believe I've commented on it here before, but her experience was also uniquely horrific. Bed-ridden, gangrene, do-not-resuscitate orders that were not acknowledged... I am terrified of what they went through.

Personally, I feel that our notions of "pain" don't really get even approximately close to what these patients endure.

They have repeatet panic attacks, when they "wake up" in a foreign place, surrounded by foreign people. Think of "teleported to a strange city" every 3 minutes.

Maybe you only get to see the sufferers when their condition is already advanced? My Dad is in the early stages of Alzheimer's, and knows it, and is really down about it. He regularly goes off by himself to cry. It's pretty heartbreaking

That hasn't been my experience (n=1 thankfully, I hope it never increases involuntary). Lots of confusion, distress, trying to go outside/go back to where they lived when they were children, not recognizing the people around them ("he can't be my husband, my husband is young!").