| > 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. |
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.