Advice please!

[nannysilver]

My husband was diagnosed almost 4 yrs ago and now no longer talks or understands anything I ask him. He suffered with seizures for nearly 3 years, due, we believe due to the side effects of Donepezil. He now takes just 5mg of donepezil and 2000 mg of keppra a day and this seems to have worked, not had any seizures for over a year but now has very poor mobility and absolutely no comprehension. He is a very mild mannered man but very strong and healthy in all other ways. I have to do absolutely everything for him which isn’t a problem and he is ok with that, but would like any advice on how to communicate more with him or any suggestions how to make him understand more, I use my hands a lot to give instructions but normally I just have to take him by the hand and lead him to the shower room, dining room etc. Consultant says there is a drug that would help with his mobility and a tremor he has, but says the side effects would be hallucinations and behaviour problems, so I have said no for now! He goes to a day centre 2 days a week and singing for the brain cafe once a week and seems happy at them. I’m just so worried about him not talking, just don’t know if he understands anything? Is this usual, he seems to be the only one at these clubs that doesn’t talk.
Any advice would be appreciated, thank you, Pat

 

[Shedrech]

hello @Pat bonner
my dad doesn't talk much at all these days, and there are many quiet residents in his care home (alongside others who chat away, mostly to themselves, most of the time)
a few things I do with dad:
keep any instruction simple, use as few words as possible, and break down into manageable chunks with a space in between for him to assimilate
as you do, I show him what I want him to do
I keep a running commentary on what's happening and lots of praise ... eg the ladies are here to help you to bed, that's good isn't it ... take your shirt off first ... that's brilliant ... now a flannel to wash your face, so it'll be a bit wet for a moment (he hates getting wet) ... bet that feels better ...
if I want his attention I tell him to look at me and make sure my face is at his eye level, but not too close - I can generally tell when he has focussed on me
I smile a lot so he feels secure
I ask him short yes/no type questions, or give a choice between only 2 things - but I stop immediately if this upsets him as these days being asked to make any choice can make him anxious and feel 'wrong'
I tell him something then tag on a 'don't we?' so he can agree, and so join in, of course he can also disagree ... eg The sheep are in the field today, dad. We like watching the sheep, don't we'
if I want him to do something, I just tell him to do it, knowing he can make a refusal clear even if he doesn't want to or can't speak ... eg I've made you some squash dad. It's in this beaker, here. Take it from me. ....... Ok, I'll just put it here for you to have later when you want (and leave it in reach)
I do also chunter on to him at times with news or comments about what's on TV - and deliberately say daft things, or mention a happy memory so I am smiling/laughing and he can join in
sometimes I get a full sentence in response - and sometimes I get shouted at as though I should know better (a flash of the old dad (to be treasured), he wasn't the most patient man)
a lot of the time we just sit together in companionable (I hope) quiet as I don't feel I have to entertain him all the time, and on a bad day any noise can be overstimulation for him

PS just read that back - sorry, didn't mean to write an essay at you

 

[nannysilver]

hello @Pat bonner
my dad doesn't talk much at all these days, and there are many quiet residents in his care home (alongside others who chat away, mostly to themselves, most of the time)
a few things I do with dad:
keep any instruction simple, use as few words as possible, and break down into manageable chunks with a space in between for him to assimilate
as you do, I show him what I want him to do
I keep a running commentary on what's happening and lots of praise ... eg the ladies are here to help you to bed, that's good isn't it ... take your shirt off first ... that's brilliant ... now a flannel to wash your face, so it'll be a bit wet for a moment (he hates getting wet) ... bet that feels better ...
if I want his attention I tell him to look at me and make sure my face is at his eye level, but not too close - I can generally tell when he has focussed on me
I smile a lot so he feels secure
I ask him short yes/no type questions, or give a choice between only 2 things - but I stop immediately if this upsets him as these days being asked to make any choice can make him anxious and feel 'wrong'
I tell him something then tag on a 'don't we?' so he can agree, and so join in, of course he can also disagree ... eg The sheep are in the field today, dad. We like watching the sheep, don't we'
if I want him to do something, I just tell him to do it, knowing he can make a refusal clear even if he doesn't want to or can't speak ... eg I've made you some squash dad. It's in this beaker, here. Take it from me. ....... Ok, I'll just put it here for you to have later when you want (and leave it in reach)
I do also chunter on to him at times with news or comments about what's on TV - and deliberately say daft things, or mention a happy memory so I am smiling/laughing and he can join in
sometimes I get a full sentence in response - and sometimes I get shouted at as though I should know better (a flash of the old dad (to be treasured), he wasn't the most patient man)
a lot of the time we just sit together in companionable (I hope) quiet as I don't feel I have to entertain him all the time, and on a bad day any noise can be overstimulation for him

PS just read that back - sorry, didn't mean to write an essay at you

 

[nannysilver]

Thank you for your reply, I do appreciate that, don’t know anyone with a ‘quiet’ partner. Your day sounds like mine, hubby still at home whilst I can manage with the help of my family. He loves music and used to sing and play the accordion but now he makes a funny little noise and that’s him singing, sadly no words! Yes a smile works wonders, that’s a happy sign, and his greeting to people is always a stroke on their face or hand, so I believe that he is trying to communicate. Just run out of ideas sometimes and the day can be very long! Any ideas are appreciated. Pat

 

[LynneMcV]

My husband barely says anything either and, when he does, it is usually just a word on its own and whispered.

I tend to do the same as Shedrech - I make the conversation, keeping sentences simple but leave room for his 'yes' 'no', 'maybe', 'perhaps ' responses.

In the early days of struggling with speech I found it best to make sure people knew to speak one at a time so that my husband could follow the chat - and to allow him time to finish what he was trying to say. I also concentrated on locations which did not have a lot of background noise going on, as this can affect communication too.

I found reminiscence cards and nostalgic picture books (both available in a range of subjects from various dementia outlets) photos, nostalgic programmes on tv and favourite music a godsend in encouraging conversation.

In particular, with the books, if I laid them around, open at a page, he would be drawn to them and point out something - which tended to work better than me sitting him down with a book and turning pages for him, maybe a little too quickly.

These aids didn't improve my husband's speech as such, but he could point and become animated in his facial expressions - at which point I could talk about the things that were interesting him and keep him engaged.

We would also go out for walks around the block. This encouraged him to stop and observe things like flowers, bees, butterflies, cars and I could step into that opportunity, acknowledge what was interesting to him and chat about it. It wasn't a two way conversation but we had communicated and his thoughts had been heard and we always returned home feeling like we'd had a good old natter.

We also found a library group for people with dementia. They would hold reminiscence sessions with old items for prompts, have themed conversations allowing people time to respond individually rather than talk over each other (if they wanted to) e.g. favourite food, countries travelled to, hobbies etc).

Much of our communication has been possible because I know him so well and understand his body language, so it doesn't always come down to words.

In fact, it was quite a shock when a doctor once wrote in my husband 's notes that he could not communicate. Until that moment I had never really thought that others did not understand him in the same way that I did

 

[nannysilver]

My husband barely says anything either and, when he does, it is usually just a word on its own and whispered.

I tend to do the same as Shedrech - I make the conversation, keeping sentences simple but leave room for his 'yes' 'no', 'maybe', 'perhaps ' responses.

In the early days of struggling with speech I found it best to make sure people knew to speak one at a time so that my husband could follow the chat - and to allow him time to finish what he was trying to say. I also concentrated on locations which did not have a lot of background noise going on, as this can affect communication too.

I found reminiscence cards and nostalgic picture books (both available in a range of subjects from various dementia outlets) photos, nostalgic programmes on tv and favourite music a godsend in encouraging conversation.

In particular, with the books, if I laid them around, open at a page, he would be drawn to them and point out something - which tended to work better than me sitting him down with a book and turning pages for him, maybe a little too quickly.

These aids didn't improve my husband's speech as such, but he could point and become animated in his facial expressions - at which point I could talk about the things that were interesting him and keep him engaged.

We would also go out for walks around the block. This encouraged him to stop and observe things like flowers, bees, butterflies, cars and I could step into that opportunity, acknowledge what was interesting to him and chat about it. It wasn't a two way conversation but we had communicated and his thoughts had been heard and we always returned home feeling like we'd had a good old natter.

We also found a library group for people with dementia. They would hold reminiscence sessions with old items for prompts, have themed conversations allowing people time to respond individually rather than talk over each other (if they wanted to) e.g. favourite food, countries travelled to, hobbies etc).

Much of our communication has been possible because I know him so well and understand his body language, so it doesn't always come down to words.

In fact, it was quite a shock when a doctor once wrote in my husband 's notes that he could not communicate. Until that moment I had never really thought that others did not understand him in the same way that I did

 

[nannysilver]

Thankyou LynneMcV,

Reassuring to hear from someone in the same position as myself. He loves photos and occasionally will say a name, so lovely when he does say something that we can understand. I will try the open books to see if I get a reaction, he loved football, maybe some managers etc that he used to like?
Also can just about manage a little walk to exercise his legs and I always point out colourful flowers and trees and do get a reaction from him. He always get fun out of the grandchildren, doesn’t know their names but does recognise their faces, fortunately they all make time for him.
So sad to see him this way, once so full of life and energy, thankful really that he doesn’t understand what is happening him.
Pat