Does anyone else have to deal with this double whammy - dementia and loss of sight?

[JulesM]

Hi - my mum has Alzheimer's and Macular Degeneration. My dad passed away in October. After 63 years of marriage mum is lost without him. My sister and I are trying to cover one week on and one week off. She has fibre myalgia and chronic fatigue syndrome so understandably struggles. She also has just spent 4 months living with mum only talking to her husband and children through an open window in the conservatory due to Coronavirus - which as you can imagine has put a huge strain on her. I live a two hour drive away and have just been made redundant so can now help with a week at a time support rather than the weekends I was originally doing before lockdown. However I do need to find a job.
Mum is severely sight impaired so we find it difficult to know how to keep mum occupied. She can't watch TV, read or look at photos. Her dementia is getting worse and having contracted mild Coronavirus back in April, she now seems to be suffering from post viral fatigue, or Long Covid and sleeps so much of the time.
Does anyone else have this issue of lack of memory and loss of sight to deal with please? If so, can anyone suggest ideas on how to try and get mum interested in life again? Mum won't talk about dad because she says it hurts too much. She just seems to have shut down as I can't get her to talk about anything, whether it is as we grew up or reasonably newer events. Everything is like a new story to her.

 

[lemonbalm]

Oh goodness, that's a lot to deal with all at once. You must all be emotionally and physically exhausted.

How about music? It is a very powerful tool which I feel is often underused in dementia. It can really help lift the mood, or soothe, or older music could bring back childhood memories for your mum, which would be less painful.

Otherwise, have you tried audio books? Could your mum follow a good story? Or something gently funny like "Winnie the Pooh?". Some of the children's stories are very charming and you don't need to follow a plot.

Do you feel you can sustain this level of care for your mum? It sounds as though you need some support. Are there carers coming in to help you?

 

[Claireyeddy]

Hi - my mum has Alzheimer's and Macular Degeneration. My dad passed away in October. After 63 years of marriage mum is lost without him. My sister and I are trying to cover one week on and one week off. She has fibre myalgia and chronic fatigue syndrome so understandably struggles. She also has just spent 4 months living with mum only talking to her husband and children through an open window in the conservatory due to Coronavirus - which as you can imagine has put a huge strain on her. I live a two hour drive away and have just been made redundant so can now help with a week at a time support rather than the weekends I was originally doing before lockdown. However I do need to find a job.
Mum is severely sight impaired so we find it difficult to know how to keep mum occupied. She can't watch TV, read or look at photos. Her dementia is getting worse and having contracted mild Coronavirus back in April, she now seems to be suffering from post viral fatigue, or Long Covid and sleeps so much of the time.
Does anyone else have this issue of lack of memory and loss of sight to deal with please? If so, can anyone suggest ideas on how to try and get mum interested in life again? Mum won't talk about dad because she says it hurts too much. She just seems to have shut down as I can't get her to talk about anything, whether it is as we grew up or reasonably newer events. Everything is like a new story to her.

Hello, and YES! This is also something we are struggling with re. my grandmother! She has advanced glaucoma, and is registered as severely sight impaired. I am really interested in the responses you get to this post, as we don't know what to occupy her with either when she is home alone. She is also going deaf (to what extent we don't really know, as she seems to have selective hearing!) so she rejects the radio/background TV. The only thing we do with her that she seems to enjoy over dinner time, is we take a crossword book out, and ask her the questions, then fill it in for her if she comes up with the answers. Very tough circumstances to be in!

 

[Sarasa]

My mother has dementia and macular degeneration. For a long time I wasn't sure if some of the problems she was having at home were due to dementia or to her failing eyesight. Certainly now mum's in a care home it's made things trickier. When I could visit things like looking through magazines or at photos on my phone didn't work as she couldn't see them. Mum loved to read, but seems to have lost the patience to listen to stories When she was at home, the radio worked as she was a news hound and loved Radio 4. Latterly she would get the wrong end of the stick about things or apply news stories inappropriately to her own life, but it was one of the last things to go. Having loved musicals she still enjoys listening to the songs. Her care home has a large screen and one of the best times we've had together since she moved there was the two of us watching some of Singing in the Rain. The projection was large enough for her to get an idea of what was happening and she made the rest of the residents fall about laughing afterwards with her rendition of Make 'em Laugh. Mum also loves dancing, as do I, so we've done a fair bit of that. Is there anything like that your mum would enjoy?

 

[JulesM]

Oh goodness, that's a lot to deal with all at once. You must all be emotionally and physically exhausted.

How about music? It is a very powerful tool which I feel is often underused in dementia. It can really help lift the mood, or soothe, or older music could bring back childhood memories for your mum, which would be less painful.

Otherwise, have you tried audio books? Could your mum follow a good story? Or something gently funny like "Winnie the Pooh?". Some of the children's stories are very charming and you don't need to follow a plot.

Do you feel you can sustain this level of care for your mum? It sounds as though you need some support. Are there carers coming in to help you?

Hi - thank you so much for your quick response. Whilst I feel tired after each visit, I am worried about my sister who must be exhausted.
Yes, I do use Alexa to play music for mum. We've tried audio books but mum just doesn't seem interested. I like your idea of children's stories - thank you. I'll give that a go.
I don't feel we can sustain this level of support but having spoken to mum she sobbed when she thought she'd need to go into a home. It was heart breaking but I really do feel that is the best option for mum. People who know what they are doing, activities and other people her age (she's 88). However, for now her carers are my sister and I.
Thank you Lemonbalm.

 

[JulesM]

Hello, and YES! This is also something we are struggling with re. my grandmother! She has advanced glaucoma, and is registered as severely sight impaired. I am really interested in the responses you get to this post, as we don't know what to occupy her with either when she is home alone. She is also going deaf (to what extent we don't really know, as she seems to have selective hearing!) so she rejects the radio/background TV. The only thing we do with her that she seems to enjoy over dinner time, is we take a crossword book out, and ask her the questions, then fill it in for her if she comes up with the answers. Very tough circumstances to be in!

Hi Claire
Sorry to hear about your grandmother. I hope some of the responses here help you too.
We think my mum is also going deaf but when she went for a hearing test she sat there and didn't press the button once. When asked if she could hear anything, she said - Oh yes!! She just didn't remember to press the button!
We do general trivia quizzes - either from daily updates or the Who Wants to Be a Millionaire book and The Chase. I play Yahtzee with mum and get her to do the adding up. I have to tell her the numbers on the dice as she can't see them :-( We read to her. Rather than use the TV we use Alexa to give the news, weather, jokes etc. which mum finds funny.
Keep on with the crossword puzzles with your grandmother - she obviously enjoys those. Yes - very tough circumstances to be in.

 

[Helly68]

I would put in another vote here for children's stories. I read these with Mummy (mixed dementia) and she enjoyed the sound of the story and in better days, could read simple, large text along with me. We bought a book on bird identification for young people with big pictures and she really enjoyed that also a classic that she read to me Maurice Sendak's "Where the Wild Things Are". Something with a bit of rythmn and a soothing ending works well

 

[JulesM]

I would put in another vote here for children's stories. I read these with Mummy (mixed dementia) and she enjoyed the sound of the story and in better days, could read simple, large text along with me. We bought a book on bird identification for young people with big pictures and she really enjoyed that also a classic that she read to me Maurice Sendak's "Where the Wild Things Are". Something with a bit of rythmn and a soothing ending works well

Thank you Hollie - I'll certainly look into children's stories. Sadly mum is passed being able to read/identify pictures. She can only make out "coloured blobs" if we sit on the sofa opposite her :-( I'll look into Where the Wild Things are - thank you

 

[canary]

Im another one who used to read childrens books to mum - the ones that she used to read as a child, so remembered them - Winnie the Pooh, Alice in Wonderland and the Wind in the Willows were strong favourites.
I also found her book of Golden Treasury of Poems. I used to read them and she could often remember them and recite them with me, so we would say them together! It often made her laugh.

 

[JulesM]

Thank you - I will certainly try and find out what books mum read as a child - if she can remember! I do quote nursery rhymes and she often chips in with those and we have a laugh. Thank you

 

[lemonbalm]

Im another one who used to read childrens books to mum - the ones that she used to read as a child, so remembered them - Winnie the Pooh, Alice in Wonderland and the Wind in the Willows were strong favourites.
I also found her book of Golden Treasury of Poems. I used to read them and she could often remember them and recite them with me, so we would say them together! It often made her laugh.

Oh, my mum used to love poetry. I'll buy a copy of that book for when I can visit and sit close enough to read them to her.. .(we live in hope). I just found a lovely old poem called "The Lion and Albert", which used to make her fall about laughing, Funny how poetry and songs stay in the memory. Great distractions.

 

[canary]

I just found a lovely old poem called "The Lion and Albert",

 

[Izzy]

I remember that and loved it as child!

 

[lemonbalm]

Many thanks Canary. I was wondering if I could record it for mum but he does a much better job. I'll send it on to mum's care home so they can play it to her. Still makes me laugh!

 

[Helly68]

The Owl and the Pussycat was a big favourite of ours....

 

[GillPJ]

Mum has macular degeneration and also very hard of hearing. We did find a set of headphones helped particularly with music and talking books, but also the TV as even if she couldn't see the picture clearly, she could hear what was going on. She also had a magnifying glass for looking at magazines, but we didn't find it very successful.

 

[nellbelles]

My husband lost his sight a long time before dementia RNIB are helpful with talking books and various aids, of course this depends if the PWD can cope with new things.

 

[Izzy]

Following on from @nellbelles suggestion of RNIB I had a quick search of their site in relation to dementia -

Search

www.rnib.org.uk