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Update and Writing to somebody with Alzheimer's

Inula

Registered User
Dec 13, 2017
11
Hi everyone

things have moved on a pace since I first joined the forum. Mum was eventually diagnosed with Alzheimer's in January this year (less than 2 years after being told - much to our shock - that she didn't have dementia) Things became very tricky during lockdown and mum had to be moved into a care home in April because of a safeguarding issue. As they were unable to cope with some of her behaviours she's been moved to another home (under the guise of it being closer to where dad lives) Dad isn't aware of her challenging behaviour as we were concerned about his mental well being and that if he knew he would "spring" her from care and take her back home! She's now on a two week trial at her new place so fingers crossed she settles in and can remain there. I managed to visit her last weekend and I was saddened to see just how much her disease has progressed. She didn't have any idea who I was - which was a sad for me but also a big relief because I've been concerned about her lucidity and how it must be if she understands what's happening to her. Having seen her I think that's very unlikely.

As I live on the other side of the country (and I don't drive) I get very few opportunities to visit but want to have some sort of contact with mum. Speaking on the phone isn't particularly helpful - I don't believe she knows who's she's speaking with - and she forgets the conversation almost as soon as she's had it. (I've also had to refrain from calling the home because my dad rings off the hook until he gets through so I think that's quite enough for them to cope with!)

I have been writing short letters to her every 10 days or so but to be honest I'm struggling with what to write - and seeing how she has declined I'm not convinced she will be able to read or understand them! Today I've taken delivery of some pretty little notelets (so I only have limited space to fill!) I read somewhere that I should avoid topics like - remember when we did this that or the other - so can anyone help with some ideas of what I can write to mum about. I did think that I might send her a photograph of us when we visited her (I think we have one where we took a selfie with our masks briefly dropped from our faces) and just write briefly that it was lovely to see her and how well she looked - but please - any suggestions would be very gratefully recieved.
Inula x
 

Jaded'n'faded

Registered User
Jan 23, 2019
775
High Peak
Make stuff up! Talk about normal things that she will still understand, even in an abstract sense. 'Yesterday we went to XX stately home. Have you been there? It's a bit like that place YY we went a few years ago that you liked but the gardens are much bigger. The tea shop was good! AA had two slices of carrot cake!'

Or 'It's raining today so I got on with some decorating. The walls are papered now but I'm still not sure about what paint to use for the woodwork.'

I don't think it matters much what you say - it won't be remembered and she may not understand who the note is from but she will appreciate getting it and the carer who reads it to her can easily elaborate and make a conversation from it. Keep it to very normal, easily understood stuff and avoid asking how she is or if she remembers stuff. Better to finish with a cheery, 'Hope you are well, see you soon!'
 

lemonbalm

Registered User
May 21, 2018
388
Hello @Inula . I hope that your mum settles well into the new care home. I had to move my mum from the first care home a few years ago to somewhere that could cope with challenging behaviour. I keep in touch with her through cards once a week, as she struggles with words and video calls distress her. I usually enclose a tiny gift and keep the notes brief. "Dear Mum, I thought you would like this chocolate/photograph/poem/hair ribbon. I hope you are feeling ok and look forward to seeing you soon/hope to visit soon/will give you a call soon" (even if I am not). The gift gives you something to say and has the potential to give a moment of pleasure.
 

anxious annie

Registered User
Jan 2, 2019
302
Hi @Inula
I live a distance from my mum in a care home so understand what you mean.
I think it's a good idea to have little notelets , you don't need to worry about writing similar things each time , as your mum won't remember. I've sent small chocolate bar as mum loves chocolate, with a little note about I hope you are keeping well, and looking forward to seeing you soon, and something about the weather, what I'm doing.
Ive also got the app Touchnote on my phone , which lets you send a postcard, that you can upload photos . I take photos of me decorating, the garden, my children cooking etc, then I write about them. You could also take a photo, of an old photo with you and mum somewhere from the past , and upload this to write about ( as long as it wouldn't confuse her ).
I have a "silver" membership which let's me send 2 postcards each month for £39.99 , which doesn't work out too much and has been brilliant for lockdown. I think Toucnote used to let you just pay per postcard but have changed their terms now.
 

Inula

Registered User
Dec 13, 2017
11
thank you so much for the ideas - I particularly like the one about making stuff up - I may try that - as (like most people( I lead a fairly mundane life that's quite routine with nothing exciting to tell! It will be difficult to get my head round it as I was brought up not to fib but I will give it a go!
I'm going to be having a picnic this weekend with my daughter and grandkids so I'll be sure to tell her (very briefly ) about that - and take a nice picture of us all. Saying I will call or visit soon is also a great idea - even though I know that's not going to be possible for quite some time. (love the Pink Floyd quote by the way - it's one of my favourites!)

I had looked at using the touchnote app right at the start of lockdown but I couldn't get it to work - but I've had a new phone since then so perhaps I should try again.
Thank you again x
 

Jaded'n'faded

Registered User
Jan 23, 2019
775
High Peak
I visited mum every week for 3 years (she died last October) - twice a week for the first year then once a week after that. Sad to say, we never had a good relationship but it fell to me to do the caring/visiting so I did my duty.

Every visit was just me and mum in her room (she refused to mix) so it was somewhat challenging. Lots of conversation subjects were pretty much off limits as they would cause confusion. (She had forgotten my kids - early 20s - altogether. She didn't know where I lived or what work I did and couldn't retain any info I gave her anyway.) After a lot of trial and error I just found the best thing to do was make things up to talk about. It helped to stick to fairly abstract things that she could talk about on auto-pilot without having to think much. She was very confused about the past, hated looking at old photos and mostly thought she was a young woman. But I could always ask her things such as 'What's the best way to cook chicken?' and make it into a long conversation. (This was also intended to stimulate her appetite but that failed!) I always took chocolate and would talk about that. At length! Another safe subject was my cats. I would make up tales of what they'd been up to and show her pics on my phone.

I tried to avoid much asking how she was because she either didn't know, couldn't tell me or wasn't interested in telling me. Ditto things like 'did you have a nice lunch?' - definitely to be avoided as she might say 'there's been no food all week. We're all starving. They won't even let you have a cup of tea.' At such times I would fall back on my favourite distraction: a quick turn to the window and exclamation of, 'Oooh! Is that a pigeon?'

But I found that she really liked me asking her things that she DID know the answers to and it also made her feel useful I think. Even if it was only showing her a paint chart and commenting on the different shades of magnolia, mum had very set opinions and always thought she knew best so I suppose (hope) it made her feel positive to be asked.

A lot of people suggest that you 'enter their world' but mum's was so bizarre I was never able to do that. (I am unable to have conversations about rescuing dead babies or people exploding in the corridor.) Instead I just took her to a land of make believe that was a little more normal :)

Good luck :)
 

northumbrian_k

Registered User
Mar 2, 2017
1,027
Newcastle
If you are writing using a computer, do you have any digital photographs or other images that you could use to make an illustrated letter? I have been writing to my wife since lockdown began and have just delivered letter number 18. They all follow a familiar pattern, sometimes picking up on things that we did together on holiday, or subjects such as different animals/birds that she would like, or things that are in the news. I use a large font and at least 2 pictures on each of the 3 pages. My wife can't read them but the care staff sit with her and go through them. She then carries them about or the staff put them up on her bedroom wall. It really doesn't matter what you write or what is in the photographs. In my wife's case even if there is a photograph of herself she probably would not recognise it. Writing a weekly letter has become part of my routine and I quite enjoy finding different things to write about, even though if I just repeated what I said last time my wife would never know.
 

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