Aides to assist with mental stimulation - Multiple System A...

Multiple System Atrophy Trust

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Aides to assist with mental stimulation

Ruffner profile image
13 Replies

My husband is mostly bedridden and is struggling to find things to do. He has always been a reader of mostly nonfiction. Never a game player so crosswords, puzzles, cards, etc. are not an option. His vision is impaired and not correctable so reading is becoming very difficult. Cognitively, he can no longer follow storylines so his tv viewing is mostly news and sports but he doesn’t get much out of either. I am at at a loss for how to stimulate his brain. He is embarrassed about his condition and doesn’t want visitors preferring me to be at his side as much as possible. I think it would be helpful for me to know if others are experiencing similar circumstances and can offer advice. Thanks for listening. Ruffner

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Ruffner profile image
Ruffner
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13 Replies
Monkeyfeet1 profile image
Monkeyfeet1

have you tried Audibleor Podcasts? A shorter format may help?

Derkie54 profile image
Derkie54

Good post

That's has been a major challenge for me as well, finding something that L likes to do.

She did enjoy going out for coffee but now she's had a stroke she will be in bed a lot more like your husband.

She also prefers me to attend to her rather than others.

I don't know what to say to you except that I share your frustration, we all want to help make their lives more pleasant.

Personally I think L has lost enthusiasm for everything and sadly that includes responding when she is spoken to.

I'll watch this post with interest.

Take care, you're doing the best you can.

Derek

Ruffner profile image
Ruffner in reply to Derkie54

Thank you, Derek. I’ve followed your posts and feel very sad as we are experiencing similar circumstances with this disease. Communication is so difficult. He has trouble expressing himself and can’t follow or hear much of what I say to him. I do not feel that we are at the end stage with this and want to find ways to make his life worth living but I’m at a loss for ideas. We haven’t gone out for coffee or anything else for two years. I hope your wife recovers from her stroke so you might be able to do that again. Ruffner

Derkie54 profile image
Derkie54 in reply to Ruffner

Hello,

L has had a slow decline over many years and I think this will continue for some time. I think I'll struggle to get her in the car now, we might have to think about getting a wheelchair accessible vehicle if it's practical.

Sorry to hear you haven't been out for some time, that's a worry for us, we may be in the same position.

We've decided to bring the bed for L into the lounge so she can feel part of everything that's going on even though she can't participate.

Might be a good idea or a bad one, we're about to find out.

Derek

Redjune1 profile image
Redjune1

My husband is in a similar situation and no longer seems to get any enjoyment from anything. He is in a care home and they do activities every weekday. At first he didn’t want to join in but now he has got used to it he does join in. So he does painting, quizzes, choir, and plays games like skittles. I don’t know that he enjoys it, but it breaks his day up. It’s so sad that he used to love reading and watching tv but can’t do those things anymore. He used to listen to audiobooks but instantly would fall asleep so that was no good, plus I don’t think he could use his tablet anymore.

Paul_and_Sue_Wood profile image
Paul_and_Sue_Wood

This is a common issue ibam sure we will find.My sue doesn't read as she can't remember what she has just read!

She tried audible but had the same problem.

She relies in TV mostly to entertain her and I've found series are a big help that she can binge watch as the characters become part of her memory so she has some recollection.

Old films or series are also a help.

Dexterity is a big issue so manual entertainment is also problematic but she is making diamante items that require placing a very small bead on a marked spot on an item, very challenging but she does it.

She has previously done X stitch and jigsaws.

It's all about the mind of the sufferer wanting to challenge the condition with something of interest.

Just remember that big challenges will tire them out so a mix of a challenging and easy entertainment would be best.

Paul and Sue

chester2107 profile image
chester2107

i think this is the worst part of this condition, my dad loved to read and chat to people, we would try to include him when we went out , but so hard when he couldn’t speak properly

i used to go to his house and we would pick out the horses and watch the racing on a saturday which he would love doing

we tried audible as well for a while , i think he just liked company to be honest xx

TK-67 profile image
TK-67

So sorry to hear this, I found music worked well for mum, it always stimulated some memories and conversation. It’s hard when you’re the one doing most of the caring too, make sure you take time for you, it’s just as important.

GreenJo profile image
GreenJo

It's so difficult re communication with this disease. TC has modified tablet from speech therapy which he operates with switch. He's been fully bedbound for 13 months. He can change tv channels and write short phrases with this- but it takes ages for him and exhausts him. Tried audible - but not great for him. Have found podcasts on YouTube great - they've got lots on every subject. TC watches/listens on tv.

maxandpoppy profile image
maxandpoppy

Oh I so know what you're talking about. My husband died in July. Bedbound since March 2021. Almost no speech - tho in Nov 2022 when finally moved to a nursing home and carers put World Cup on TV he stated very firmly 'I don't like football'! He was an intelligent man interested in people, politics, the natural world. The TV streaming channels were a godsend. We learnt what he enjoyed through trial and error. Old stuff was often best - movies and music he knew so embedded memory helped him engage. They took him out of the miserable present. He had been a great storyteller so I wrote down some of his anecdotes that I knew pretty much by heart and read them to him. He would start laughing in anticipation of the punchline. It was a lot of effort keeping him interested and entertained but I owed it to him and we enjoyed it together

Ruffner profile image
Ruffner

These responses are so helpful. I like the ideas that bring back old memories - music, movies of his younger days. He doesn’t have stamina for activities. It helps to know that other caregivers experience this and that it is part of the disease progression. Thank you.

Heronblue profile image
Heronblue

Hello Ruffner, when my husband was bedridden he couldn’t watch tv, which was very sad as he was a massive sports fan. My daughter and I tried everything, we bought an old CD player and CD books from EBay so he could listen to John Grisham stories. My husband needed his room to be dark so he was often alone for periods with only his thoughts and I don’t know how he endured it. So maybe podcasts would help him? We were clutching at straws really. I feel for you both & I’m sending you a hug.

Ruffner profile image
Ruffner

I felt your hug this morning. You speak of your husband in the past tense - did he pass recently? If so, I'm sorry for your loss. I wake up at 4:30am almost every morning and spend a couple of hours alone with my coffee and mentally prepare myself for the day ahead. I remiind myself that it is just one day I need to focus on - anything beyond is too much to think about. I don't know how my husband gets through his days but I suspect that he feels so weary and unwell that sitting in bed is often enough. I will try the audio but don't have too much hope as he can't process conversations at a normal speed. I have to speak slowly, clearly and loud to him and often will repeat several times before he gets it. Thank you for caring.

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