My mother has dementia and macular degeneration. She went from an assisted living facility to a nursing home this year because she fell and fractured her pelvis and couldn't walk anymore.
With her not being able to see very well she has big trust issues with the staff at the nursing home. She doesn't believe anyone when they say who they are - she constantly says to me "the so-called nurse" or the "so-called doctor" and it is very frustrating. She thinks they are poisoning her food, giving her the wrong medications, etc. She has started to have hallucinations and thinks she "sees" a lot of things that aren't there. I live 400 miles away and cannot travel due to illness so I have to do everything by telephone. She will tell me she has pain somewhere, so I call the nurse practitioner to go in to see her and then when the NP comes in my mother doesn't believe that she is really an NP so she tells her she feels fine and doesn't have any pain. I try to explain that mom needs to trust the NP when she comes in, she says she will next time and then the same thing over again.
Any one else have these issues?
Some of this is long-distance manipulation and playing the guilt card. Stay ahead of her by talking to the head nurse weekly for an update. Ask if they have observed hallucinations. If they have not, she is mixing up dreams with actual events. That they call Delusional thinking.
Back to the "hallucinating" those suffering with macular degeneration and seeing images are not hallucinating, it is part of the disease, and it's name is Charles Bonnet. -- Hope this helped and is written with an intent to bring a smile in sharing one of the most devastating diseases. Vision is precious, and for mom who was an avid reader I can't repeat the words she hurls at the disease when she is trying to make out something.. hehehehe...
If anyone else has these two problems to deal with I would love to hear how you handle it.
However, I can still "find" her in the confusion by reminding her of things that we talked about years ago. I found a few things that she remembers and I bring them up during the course of our conversations to see that glimmer of cognition.
Her words are mostly gibberish, and if left to her own devices, her conversation is nonsensical. But I am able to direct the discussion to something that she understands. We have a few laughs too!
She doesn't have much of an attention span but that also allows me to repeat several of the stories and "words of wisdom" a few times during the visits.
She is no longer ambulatory, which makes me sad because I'd love to take her on an outing. It's just impossible for me to handle her... so I'm thankful for what I have. At the same time, I'm sad and frustrated for her. I can't imagine what struggles she has on the inside. I pray for peace for her every day. And I live to make her laugh! :)