Anyone else have a Mom who has dementia and macular degeneration?

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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?

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My Mom has had macular degeneration for about 12 years, and developed dementia a few years ago after a bad fall (broke her hip in the process, and hit her head). It has been a heartbreaking road for her and it's very frustrating.
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! :)
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My mom also has macular degeneration and dementia. She is still able to dress (with clothes laid out), get around with a walker, recognize immediate family, but I wish there were some activities she could participate in. She sits in the chair here in the living room and has always been a "doer", never sitting, and constantly asks "can I do something for you?", and I am most of the time at loss for what that might be. It makes me sad to not have things for her to help with. Any suggestions would be more than welcome!
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My father has both ALZ and Macular Degeneration. My heart pulls for you. I know it has been a long time since you posted, but I hope you read the responses. My dad has no interest in music or books on tape. He is and has been in late stage ALZ for a number of years and it is very difficult to distract him by normal means when he "sees" things. His speech is his own language now and we have very little knowledge of what he is actually trying to tell us. Sometimes he is having conversations with people that make him laugh, other times he appears frightened and terrorized. The only thing we can do is try to talk to him soothingly and rub his back or hold his hand. When it is really bad we give him Ativan that the dr prescribed. That is really our last resort and only if his hallucenations or delusions are torturing him. I think we all try to "logically" try to figure out what is happening when there is no logic involved. If your mom is still able/enjoys music, I think that helps a lot of people. We have learned to always say "Hi dad, it's Joanie" or the caretaker say, "Hi Mr Howard, it is Shari" every time we come into his presence. We often repeat this while we are caring for him or if we step out even for a short time. It seems to help, but not always. Sometimes we simply hug him and tell him it will be ok. Any other suggestions, please comment.
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Can she have her own electronic devices that would play music she has specially chosen and play books on tape for her enjoyment?
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Well, I am aware that Dementia doesn't cause macular degeneration. I just wanted to know if anyone else has this challenge with their parent. My mom is almost completely blind. She had the shots for a few years, unfortunately they didn't help her. All she can see are shadows and that is only if it is very bright in the room. So all she can do all day is sit in her wheelchair and think of things - she cannot enjoy any of the activities, except listening to the music when they have that entertainment. The mixture of Dementia and macular degeneration is very challenging because without being able to see and relying on people's voices she gets confused. She also doesn't understand that new staff come in every 8 hours - she thinks the people keep changing their names.
If anyone else has these two problems to deal with I would love to hear how you handle it.
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I'll address your question to the macular degeneration part. Dementia has nothing to do with macular degeneration. -- Seeing things does occur to some patients who have macular degeneration. My mom has it, and there is no dementia or anything remotely close to it, on the contrary it's the other way.. hehehe at times I wish she'd forget a few.. -- With macular degeneration the retina sends the image to the brain and the brain interprets what's it all about, and so whatever the signal voila that's what's seen. Mom was seeing flowers all over the place, and also she was seeing a face with a lopsided smile. Mom belongs to a support group for macular degeneration, they get together once a month for lunch, most of them have wet macular degeneration, (advanced stage) and receiving either Lucentis or Eyelea injections. Those with the dry form of macular degeneration. -- Seeing things they all know is a disease that can happen for those with macular degeneration whether wet or dry.. and it does have a name.. it is called Charles Bonnet. Mom's Retina Specialist told her.. she is suffering from Charles Bonnet Syndrome. She got on her computer and researched it and told her group all about it, so they are well informed on Charles Bonnet.. Mom has a very large screen and a special program on her computer called MaGic. If it were not for the macular degeneration which hit her literally overnight, mom is in perfect health. Regarding trust issues, it goes with the not being able to see territory. staff members often change their voice to a "caring" tone asking questions etc. this throws off who they are, mom can't read their name on a badge but she is not hesitant to tell them to tell her their name nor is she one bit hesitant to ask what happened to the item she placed on the table that seems to have walked away.. heheheh.. a well meaning individual may have removed it, but mom didn't see them do it, so where did it go.. and why in the blazes did they move it.. One thing for sure, if mom told me somebody is doing something and she doesn't like it, I will believe mom regardless if who is involved from the administrator on to the chief of chiefs.. , it's mom's word and she has always been up front and calls a spade a spade, and low vision or no vision is not going to change that. She is my mom they are nothing to me other than providing a service for which they are compensated.
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...
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I would talk to both the social worker and her doctor about what can be done to address these issues. My mother, who has dementia but no vision problems, can't tell one staff person from the other. I think my mother has a hard time wrapping her head around the idea that females with exotic accents can still be mds! My mother also does not process pain the way she did when she was younger, she often can't tell anyone what hurts. I asked them to switch her pain meds to a schedule rather than on request. In the past, if mom called and said she's in pain, I ask if she's pushed the button to call for assistance. I would stay on the phone until someone comes in and we all discuss what's going on. Now that she can't dial the phone on her own, I gave her a card that says " please call my daughter" with my phone number on it.
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My MIL is CHF with dementia and macular degeneration. She told me there were flies all over the food and they are constantly spraying for bugs. Not true.
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.
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