First 'real' dementia moment...

For issues specific to caring for someone with dementia.
Hello there,

Moment probably isn't the right word, so I apologise if it's considered rude. I'm really not well versed in any of this. My mum has many conditions; mostly I've been her carer because of her spinal problems but a while back she was diagnosed with the early stages of dementia.

This hasn't been so bad as it has mostly just been bouts of forgetfulness, the occasional imagined conversation (eg. "Aren't you going to X today?") but today has been something else entirely.

So far today mum has believed, with absolute conviction that...

My girlfriend has a 35th reunion dinner with her high school (she's 33) and her dad was going with her - her dad is in Hong Kong.

Then my girlfriend has some sort of massive eye problem that required surgery. Never happened.

That her dad was in a car crash and lost a leg. Nope.

That her dad has accepted a job in Kenya, but then mum felt "sick" about telling me because she had been sworn to secrecy.

That she had found Grandad from Only Fools and Horses lost teeth in a desk drawer. I put the TV on thinking that some sort of mental stimulation might refocus her mind away from the artificial reality she'd put together. This may not have been wise.

That she'd laid out some bin bags in a pile next to the vice and drill in the kitchen. You can probably guess we don't keep such things in the kitchen.

And now she's just told me that an unknown 'it' wasn't food poisoning but it was something to do with the pollution and the planet. This was like she was continuing a conversation from hours ago, only one that I'd never been involved in.

So yeah, what do I do here? Smile and nod? I feel like I've woken up in an alternate reality. As I say, she's had some moments before but this is like tootling along in my VW Golf on the way to Cardiff and then somehow breaking the light barrier, getting lost and ending up staring at the Pillars of Creation in the Eagle Nebula.

I shall try and convince her to go see a GP again because I don't know whether it's normal to go from manageable, tolerable everyday forgetfulness to a completely constructed reality in which incremental horror seems to have afflicted the people I love but any words of wisdom from people more accustomed to this would be appreciated. Thanks :)
First of all, I really emphasis with you!It's an awful transition to the Dementia journey.
I would advice you have a urine test first of all.UTIs cause even more bizzare behaviour.
I've learnt to just go along with my husband's confabulating. No point in trying to make him see things in real terms, he just gets agitated, and it's me that doesn't know what I'm talking about!!. Distract from the subject if you can. Kind lies I call them, if tell him his mother can't get out today because of the weather etc.I can't possibly remind him she died many years ago.He would grieve and then forget anyway.
The one thing I've recently corrected him on, was when he said the vet had told him he hadn't broken his finger. I chucked and said oh love you mean the doctor! He did smile at that!
Back to you though.UTI test first even if to rule it out, then you will find ways of coping with the strange things. Not easy but you will
Take care xx
Hi, Pet. Thanks!

And actually, yeah, that makes a lot of sense. Didn't think about it until you mentioned it but I do recall yesterday mum went to the loo a little more frequently than normal so she may have a UTI.

She's having a nap now which I'm slightly thankful for. :) I'm hoping once she wakes up she might have forgotten all the bizarreness. It might just be me looking to connect correlation with causation but I often feel that the previous forgetful behaviour is more commonplace when she's tired.
Hi Kath

yes, check for a UTI first but also be aware that dementia can go from 'mild' one minute to 'full on' the next. It's not uncommon for dementia patients to be at a reasonable level for some time, but then they will take a downturn to the next stage.

Anyone caring for someone with dementia will tell you that their 'reality' is completely different to ours and sometimes the only way to cope is to 'live in their time and place'. There is a book called Contented Dementia by Oliver James that you would probably find useful it's available through any bookshop or on Amazon.
That's very worrying. Maybe now would be a good time to work out a long term strategy, how you will manage in the next 5 years? It's better to have some sort of plan, because it's difficult to think straight in a crisis, and good places have waiting lists.
Is mum on any benefits? Claiming Attendance Allowance? Claiming exemption from Council Tax due to "severe mental impairment" (refunded back to date of diagnosis?
Has she had a Needs Assessment from Social Services? You, a Carers Assessment?
Then think about introducing some outside help.
Look at local residential homes specialising in dementia (EMI or Elderly Mentally Impaired)
Do any have respite beds? Many homes like to offer respite so that they can meet and assess someone, then when a permanent bed becomes available, it will be offered to one of their "regulars" first.

Are you familiar with the charging system for care in the home, and care in a residential home?
Hello, thanks for the replies. I shall have a look at that book, Susie, when I next have a tenner free.

Mum gets Attendance Allowance and doesn't pay Council Tax.

She had a needs assessment earlier this year. I had a carer's assessment as well which wasn't particularly productive. Aside from offering me a coffee date with a random stranger, they were unable or unwilling to offer anything that I felt would actually benefit me. Probably wouldn't benefit the random stranger either! :lol:

As for mum, at the time what they offered was help with things that I already do without issue and it didn't seem worth the costs involved - that was mum's decision who was quite capable of making a decision then.

I know about all the care costs, both in-home and residential, as when we had the needs assessment I looked into it all since I was less than impressed with the deliberately vague terms the local authority included in their various literature.

I'm guessing from the mention of permanent beds, it's not considered likely/possible to keep caring for someone with dementia at home?
Just looked on a well known auction site ;) and found that book quite reasonably priced ... SwULNZg9hp
Hi Henrietta,

Thanks! I immediately went looking for the ebook version (I'm one of *them*!)

I'll see if I can remember my auction site login details instead. :D
KathR wrote: I'm guessing from the mention of permanent beds, it's not considered likely/possible to keep caring for someone with dementia at home?
unfortunately there does usually come a time when caring at home for someone with dementia becomes very hard indeed - I found it was the emotional aspect rather than the physical which was the turning point for me. Once Mum had got to the stage of no longer knowing who I was and once she had got to the point of aggressive arguments then I knew I had "lost" my Mum. To all intents and purposes I was caring for a total stranger, not the loving best friend I had always known.

Almost immediately Mum moved into a care home we were able to re-establish our Mother/Daughter relationship again - I won't say that everybody was happy about the situation, Mum was always asking when she was going home, but by then she no longer recognised her home anyway; by then "home" was the little 2 up 2 down house in the backstreets of Battersea where she grew up in the 1920's.

Having said some people do manage to continue caring at home, especially if there is a lot of family support to share the burden.
The more help you get at home, the longer mum can stay at home, if that is what you want.

If mum has over £23,000 she would be expected to contribute towards her care, but that is what the Attendance Allowance is for. It is also important that if she does have over this amount, she contributes towards the care which you provide in some way, then the amount of cash she has goes down, and she becomes entitled to free care.

If the money is held in a joint account with you, only half the money counts as being mum's.