[kworks]

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.

[wobfan]

> 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.

[14]

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.

[14]

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.

[kworks]

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.