How to feel happy visiting parent who can't communicate any more

[NotReallyJustAtTheMoment]

Hi,

I wondered if I could ask for advice on how to cope psychologically now DM is very far on with dementia?

A couple of years ago, I read a good book that was recommended here and it helped very much with the earlier stages. DM had a whole imaginary world going on, and I just joined her in it, and took part in all her activities. She was helping to run the state opening of parliament, and was part of the journalist pool during the election and all sorts of things. She would call me from the location on her mobile and tell me about it in a hushed tones, with great excitement. She even delegated some important affairs of state to me and was very pleased with my totally imaginary efforts. My job was mostly to look after any lost children that she found, and to write important and complicated letters that she delegated to me. It was really quite good.

Just recently she has had a big downturn and is now in a care home. She was asleep for about a week, then awake briefly each day, but not talking or making eye contact. My brother says now she is awake but doesn't recognise anyone and just talks randomly, making no sense. She is not aware of the tv or radio. I talked to her briefly on whatsapp video and she said "hang on, I'm just trying to wake up" but I don't think she could really wake up properly and I worried that I was taxing her too much by trying to talk to her.

I find it terribly hard to cope with seeing photos of her like this, and I don't understand the rules of the new situation so don't know how to play along.

I am anxiety/ASD lady, and am coping with anxiety/ASD teen at home, so have very little wiggle room for more worry. Ten years of clinical psychology input helped, but didn't entirely make me bulletproof.

I wondered if anybody might know how to make this weirder stage fun, or at least tolerable, so I can take part without getting the absolutely raging heebie jeebies about the whole thing?

Am I meant to play helicoptier bingo with her or something? I have no idea.

She has a very interesting inflatable bed, and I googled it, but that's the only fun I've been able to find in the situation so far.

I'm sure there ought to be something there if I can understand what is happening her head.

Thanks!

I don’t think you can make it fun, now. My mum at this stage responded to touch, her favourite music and me reading nursery rhymes and familiar poems, but she needed it to be calm and she drifted in and out of sleep.

OP

I am sorry that I don't have anything helpful to offer but if you would be so kind as to say what the book you refer to is I'd be very grateful as it sounds like it would be very helpful for where I currently am

There’s no ‘fun’ to be had at this stage.
sit with her and hold her hand and sing her the songs that maybe she sang you when you were a child. I’m not sure was asd has to do with it? I’m ND btw and my dad is at a similar stage. It’s good your mum is in a care home and you’re not caring for her.

My MIL is at this stage. There is really no ability to communicate with her directly any more. What is easier if the family go and visit in twos, and sit with her and chat to each other while holding her hand. She seems to know that they are family or at least people she is happy to be around, and seems content to just sit and let the conversation wash about her. Visiting solo is very much more difficult and upsetting somehow.

@HeddaGarbled
Thanks, yes, that idea of reading familiar things makes a lot of sense, because it doesn't require a reply from her. I will think about that.

Maybe if I ring up I need to find things to say that she can enjoy but that she will know she is not obliged to respond to?

When I rang before I said "You look very comfy in your warm bed. You have done everything that you needed to do, and you can rest now. Just rest in your warm bed and enjoy eating your biscuits."

Is that the right sort of thing, do you think? It seemed to be okay-ish, but she was definitely trying to start her engine and not managing it.

I don’t think you can make it fun. I used to sit and update my DF on the latest family news, what DC were doing, my job, my garden. Never expected an answer as he was asleep most of the time. He would often stir at the sound of my voice but no further response.
it’s sad.

Thank you all for commenting. This is very helpful.

This is the book:
Contented Dementia: A Revolutionary New Way of Treating Dementia : 24-hour Wraparound Care for Lifelong Well-being Paperback – 6 Aug. 2009
by Oliver James (Author)

@Upperroom yes I'm glad she is safe in a care home. I definitely could not have done what needed done. My DM is the same and she wouldn't have tried to look after one of her own parents. I have the greatest admiration for people who can be nurses or care workers.

It's good to know that this is meant to be kind of hard. I thought it was just me. My Dad finds it like water off a duck's back, but he's never been bothered by anything ever, which is very good and helpful.

Thanks for all these tips about singing and stuff. I haven't thought of that.

I like @Delphigirl approach of going in 2s.

I understand that hearing is the last sense to go so just hearing your voices would be comforting. Otherwise I’d take a book and read aloud or sing.

if it is a long visit and you start to tire someone on here once suggested that David Attenborough documentaries are nice to have on as his voice is so soothing

@Rainbowqueeen Thank you, that is really helpful to know. I noticed that my Mum responded to my voice, even though she can't really talk back. I will have a think about what I can do with that.

https://www.playlistforlife.org.uk/ has some great ideas

And look up intensive interaction for dementia

Could you let me know the book? My dad has moderate dementia.