Uncategorized – Page 2 – Dementia Stories

Repetition

One of the most frustrating symptoms of dementia for a carer, family member or friend to deal with is the repetition. Mum has always been known for repeating stories, for as long as I can remember, (maybe it was actually early onset) but it’s not just the same stories over and over again.
Each morning I get asked 3 times within half an hour “Did you sleep well?”. It makes no difference whether I repeat with the same answer or something completely different.
I’m asked what’s happening for the day & once she’s told, she’ll still keep asking roughly every hour. Either the same question or “Where did you say we’re going?” “Did you say our appointment’s at 2pm?” (For some reason most ‘times’ get moved by half an hour in her memory. I’m asked every morning what my coffee is, what’s in my breakfast bowl & where is her memory board when I prompt her to go to it.
At the moment I’m asked each day when Easter is? I tell her it was last weekend & she still has an Easter Egg to eat. This is happy lost memory as she gets excited about her chocolate egg all over again! However, questions like these are gutting because you can see in her eyes that she’s upset knowing that she must have known when it WAS Easter & so how does she now not know when it is?
When arriving home from somewhere I’m usually asked a few times if I had a nice time. Occasionally if I keep the response the same, she will say “Oh yes you told me, sorry”. Then she looks really upset because she knows it must be annoying. I hope I’m improving with my facial expressions & tone of voice in not letting her know, at least too often, that I’m irritated or frustrated. It’s so unfair that you can’t help it annoying you but she can’t help it!
The stories that mum shares are starting to change as she forgets details & gap fills with other things. I used to correct her but soon understood that this only causes distress as in her head the memory is correct. I’m desperately trying at the moment to get mum to fill in a Life Story Book to hold on to some of her memories. I want her to get the stories in it before they change anymore. I don’t want to write them myself because I feel that one day in the future she may be reading them & if they’re not in her own hand writing then she may be disbelieving of them being true.
I try to remind myself amongst the fairly constant repetitive questions & the constant humming, (I’ve not told you that mum hums constantly, literally-even while she’s eating-random tunes, normally just 2 bars and won’t change for about 6 months) that one day she won’t be able to repeat her stories, one day she won’t be able to ask questions, hum or make a any contribution to a conversation. This thought is absolutely devastating as Dee has ALWAYS loved to talk! She still does but her response to what you say is now often some random past memory that has nothing at all to do with the conversation you’re having.
The other thing that she still has, which can be the first thing for someone with Alzheimer’s Disease to lose, is her sense of humour. Her jokes may often be inappropriate or simply make no sense at all, but she still mostly recognises a joke when you make one. She also, of course, has a great laugh with me over her ‘Deeisms’. I ask her permission to post them on Facebook to spread the laughter & she knows about my Blog, though I’m not sure she has the capacity any longer to understand what this means. She does trust me implicitly though, thank god, so I don’t concern myself about this. She always says “Laughter is the best medicine!”
I hope more than anything/everything else, that her sense of humour is the last thing to go.
Clothes that I am loathed to wear because of the writing they have on them that invoke the same questions or comments no matter how many times they are seen.
Adverts on TV that invoke the same thoughts, comments or questions every single day. I find myself cringing because I know exactly what is about to be said & my response to it is neither recognised nor taken on board to alleviate any stressful emotions that may have incurred.
Repeats of TV shows (Yes Judge Judy mostly) that you know will bring certain comments, judgements & noises no matter how many times they are seen. It IS fascinating that these things remain identical regardless of how many times they are repeated.

Progression

After some months of lots of different health, financial & dementia issues I realised mum and I were quite depressed & not really coping very well. Thanks to some amazing courses I sat by a company called Promas- www.promas.co.uk (who I’m now a non-exec director for-that’s how amazing I think they are), an incredible book my friend’s mum bought me called “Knickers In the Fridge” by Jane Grierson & the fact that dementia has not stolen my mother’s sense of humour yet, we began to learn to laugh at the verbal mistakes she makes. This was truly life changing! Having the permission to take the piss & have a good giggle at things (and even Facebook them) that used to make us sad & frustrated was so enlightening. These will mostly be shared under the category “Deeisms”.
Mum thanks me daily for making her laugh instead of letting us continue to be sad at what she’s lost. However, this wouldn’t be possible without her incredible sense of humour & ability to laugh at herself.
She also thanks me daily for my patience, something that makes me so happy as I know that often my patience is non existent but as long as she’s not aware of that then……cool!
One of Dee’s catchphrases is “Laughter is the best medicine!”
So true & so vital I feel, when dealing with the awful disease of dementia.

Dee will always be Dee (even if just by name) but my Mum is no longer my Mum. No matter how hard I try to bring back some piece of her being my Mother, my teacher, my advisor, my confident, my agony Aunt, my supporter, my listener or my companion, it is no longer possible.

Introduction

Hi my name is Rachel & I’ve been an unpaid carer for just over a year.

I had been living in Australia for 11 years when I was told by my mother’s Primary Care Practitioner that mum had suffered Cognitive Impairment from a stroke in 2011. She suggested that if mum’s memory was stimulated & her life was simplified, then her memory could be improved. I decided that I would move back to the UK for a while, de-clutter mum’s house, set her up with some memory

classes & tools & try to help to simplify her life. I had been back in Australia a month after a stay with mum in September 2014 when I discovered via an email from mum’s Care Practitioner that mum had in fact been diagnosed with Vascular Dementia & Alzheimer’s disease 3 months previously but nobody had told anyone but mum, who of course forgot. I realised that a short term stay was no longer an option & started to close down my life in Australia & sell my belongings.

I returned to the UK on 20th Feb 2015 to quickly discover that mum wasn’t coping at all. She had broken her wrist in a fall, was missing appointments, could no longer follow a recipe to cook and was forgetting to eat and the house was filling up with repetitive items & an abundance of junk mail as she could no longer tell what was important mail & what was rubbish. Within a couple of weeks I realised that I wasn’t going to be in a position to work. Mum was already with 8 departments at Treliske Hospital (so appointments there were almost daily) & I needed to get her to Memory Cafes & things to stimulate her memory and run the house and finances in all areas. I also realised that finding myself somewhere to live was not an option either, I needed to remain living with her.

I spent the next 6 weeks dealing with mum’s appointments with the different departments at Treliske hospital soon increasing to 12, and me trying to get information and help and support for us both. We had disasters with the Department of Work and Pensions & the council trying to secure income etc. Everything just kept going from bad to worse.

By the time I was visited by a carer support worker, (about 6-8 weeks in) I was a mess. Lucky for us, she was amazing. Thanks to her, slowly each of the support people I needed and interviews for benefits for mum started to happen. I was swamped in forms to fill in (which my support worker was always available to help me with) and so many interviews at the house that I could hardly fit it all around mum’s appointments which were now 3-4 a day. I also couldn’t talk about caring for mum without breaking down in tears. She was then diagnosed with cancer of the breast which was really confusing for her. It was all so confronting which the nature of her disease & the stress of having no idea what I was doing, no support, no money, no carer’s training and I knew, I discovered, absolutely NOTHING about dementia!