Expert Q&A: Rare dementias - Tues 3 March, 3-4pm
Our next expert Q&A will be on the topic of rare dementias. It will be hosted by Nikki and Seb from Rare Dementia Support. If you have any questions about rare dementias, they will be here to answer them on Tuesday 3 March between 3-4pm.
You can either post your question >here< or email them to us at email@example.com and we'll be happy to ask them on your behalf.
As you say there is no knowing! My mother has a ginger tabby soft toy, her care agency bought it as a 'leaving present' for her (they were lovely people). But her favourite soft toy is a dog from a charity shop which to my eyes is not particularly attractive!I can just imagine! I had a look for a suitable cat but brown tabby seems to be not a thing so I have ordered a grey one. I have no idea how it will go down!
I've seen those I think, fairly disturbing! Will see how this cat and a jar of marmite goes down at christmasI picked up a small curled up cat from a french market for mum. About €8. Mum keeps it by her pillow. It does make a very weird purring noise but mum is deaf.
oh lovely it’s just sad isn’t it, & you must be exhausted by all this. Yes like Aged Mother if your Dad wasn’t moaning we’d be worried! it’s Aged Mothers go to happy place her comfort zone - sadly a character trait throughout her life. The not wanting the cat at the end of the visit though made me smile - as it shows that your Dads still got enough about him to know how to push your buttons ; my mother does this & im so deeply immersed in the situation that I don’t see it!!Christmas report - some ups, some downs. Dad started fiddling with his watch at all hours of the day and night and setting off the panic alarm which calls everyone, which was very disturbing for the other home residents as the phone was ringing at 4am. I took that number off the panic list leaving only mine, so dad called me numerous times accidentally over the holiday, including several times on Christmas eve where he asked me the same questions each time, including the extremely painful "I will see you before Christmas though, won't I?" I told him yes, we'd be down at the weekend with all the siblings and the grandkids. Funnily enough he doesn't seem to find that fact that we can talk to him through his watch at all strange.
I think I hoped he would barely be aware of the festive period but obviously decorations and lots of people visiting the home in the run up to Christmas made him more aware. Very difficult to know what best to do as he is exhausted by conversation and hates being taken out of his routine, and for good reasons. Routine gives order.
I spoke to him on Christmas day too and he complained about the staff "Wouldn't have been my choice of staff today" and "I think lunch will be served shortly, won't be to my liking I expect" so The Grinch lives on! All this in full hearing of the staff, who I'm sure are used to it, but still. I was doubly glad I sent an F&M hamper to the staff for Christmas at this point!
After Christmas we went down to visit and the lunch and panto scenario was quite a success! Dad enjoyed the theatre, although he told me he didn't recognise it, had it changed? (No). He ordered a white wine at lunch, an unusual choice for him, and then complained it was white wine.
He also said he 'hadn't eaten anything since breakfast' (apart from numerous cups of tea, biscuits, and the fact it was barely noon. Not to mention he now has multiple breakfasts - if he gets up in the night he is given a slice of toast and cup of tea and sent back to bed!) However, he ate his panini so slowly, spending much of his time looking around trying to take in his surroundings, he only managed half of it.
He loved the cat I gave him, until the end of the trip when he gave it back to me and told me he didn't want it, which I found rather irritating I'm afraid, after it had gone down so well at first.
"It'll only sit in my room"
"You could say that about anything, Dad."
All in all not too bad really, Dad is certainly using his watch to tell the time and is largely settled. If he wasn't moaning I'd be worried I expect!
Thanks for your reply @DesperateofDevon - I know, it's funny how moaning can be such an absorbing hobby, isn't it! I'm hoping he'll 'adopt' the cat as time goes on and it may be soothing in some way.oh lovely it’s just sad isn’t it, & you must be exhausted by all this. Yes like Aged Mother if your Dad wasn’t moaning we’d be worried! it’s Aged Mothers go to happy place her comfort zone - sadly a character trait throughout her life. The not wanting the cat at the end of the visit though made me smile - as it shows that your Dads still got enough about him to know how to push your buttons ; my mother does this & im so deeply immersed in the situation that I don’t see it!!
Though everyone else does!
it’s a childlike action that my own mother frequently uses to direct attention into herself. Likewise choosing food & saying it’s wrong, oh the list is endless. I’m afraid I can do nothing right most of the time & it cut me to the quick every time!
I find visiting alone not an option anymore for my own sake, & that saddens me be it is now a necessity as mothers dementia progresses.
The carer grumbles are normal, if anything could be classed as normal in this situation.
you are doing your best & im sure the cat is a big hit- not that your Dad will let on!
take care lovely
you sound full of energy & a lot happier - undisturbed sleep is invaluable.Thanks for your reply @DesperateofDevon - I know, it's funny how moaning can be such an absorbing hobby, isn't it! I'm hoping he'll 'adopt' the cat as time goes on and it may be soothing in some way.
No calls for the past few day which either means the watch is not being worn, or he's stopped fiddling around with it... he was using it to tell the time so he can still do that, and follow political events.
Next step will be more on the legal front. And I'm determined to get his GP to pull their finger out re: diagnosis in 2020.
A lot on your plate at the moment. Baby steps lovely , baby steps.I got the letter! We have a diagnosis. No meds or anything, waiting on the MRI for that. So I guess I need to move forums officially.
The letter went into some detail about the conversations Dad had with the consultant as well as some of the scrapes he gets into, walking into the road without looking being one, going to the wrong places for another. Arguing with the staff about where he has lunch - imaginary restaurants and meat being served. And then he argued with the consultant about it!
He was asked about his family and he remembers both his marriages and all three children, but he didn't think he had any grandchildren. This hit me really hard.
Scan didn't happen because younger brother won't drive (he can drive, but doesn't, and of course now doesn't have access to a car) so they were going to get a taxi, but didn't book one, and ended up waiting for an hour and never getting there. But - they have another appointment. Apparently the original one they didn't think to take the key for his watch and of course you can't go in the scanner with a watch on. You couldn't make it up, it's one thing after another!
And it looks like my nan has got cancer again - after having treatment last year, and being given something of an all-clear, they've found something else, somewhere else. I'm gutted to be honest.
Thank you! I am still on waiting list for a coping with stress course and despite having felt better the past few weeks I'm glad I'm still on it now as I can feel the old overwhelming feeling of the stress returning again...A lot on your plate at the moment. Baby steps lovely , baby steps.
I think you need one
Thanks! Yes I agree, I'm not too concerned - may be helpful for the legal case but actually the ACE III results and diagnosis are probably all we need.I think you have performed miracles
The scan will happen, just annoying about the watch............ and brother.............
Im sorry to hear about your nan
I agree, am trying not to stress about the scan. Dad hasn't been to memory clinic, they came to him! Sorry that your mum was given that rather unsatisfactory result, although sounds like it worked out in the end... although it does take a crisis doesn't it...@imthedaughter , glad you've got a diagnosis. My mum refused to go to the memory clinic but was OK about the scan. It came back saying she just had 'normal' age related changes to her brain. That made her assume she was fine, and her GP wasn't really much help translating the letter either. When she had a meltdown in her doctor's surgery they contacted the memory clinic and they sent round a consultant. He used the scan results to diagnose probable vascular dementia. I think what I'm saying that don't worry too much if the scan doesn't happen for a while. Your dad is safe and that is the main thing.
Sorry about your nan. It's always tricky when there are too many things going on at once!