• 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 talkingpoint@alzheimers.org.uk and we'll be happy to ask them on your behalf.

Too "aware" to be in a care home?

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Crikey. That's all very tough. Good for you standing your ground. The psychological blackmail, conscious or otherwise, is another very hard thing to cope with, it seems to me.
It’s a constant pressure sadly, just had a phone call tonight from Mum. Apparently she’s got another UTI & is on antibiotics, nurse came out yesterday. I could hear the TV on loudly in the background- sounded like who wants to be a millionaire- mum quickly came off the phone as the theme tune came back on! Obviously rang me bored in the ad break!
 

TNJJ

Registered User
May 7, 2019
1,056
cornwall
Yep Mums incontinent, has been for years!
Unable to cook or clean, can’t be bothered to shower, yet she is deemed capable & doesn’t like to be told what to do.
The paranoia & hallucinations are still present but even a low grade UTI sends her off her legs. We lurch from crisis to crisis- it’s not nice but it is what it is!
Mums had hospital admissions several times, a falls risk ( thank god she’s got soft bones!!!) & bitterly complains about not being able to go any where- yet won’t socialise with ‘old people’!
She won’t attend memory cafe/ clinic, it’s a consultant or nothing.
Mum now talks about me looking after her & her moving up closer to me! Until I get definitive diagnosis & care sorted that’s not going to happen!
Just because my Great grandmother lived with her as a child she thinks I’m going to look after her !
Um ..... no!
My Mum didn’t move my Granny or Grandad in with us, infact I was a child carer after school & during holidays. Yes my Mum needed time away alone or with my Dad. Meanwhile I slopped out, & did things no one under the age of 16 should have to do!!
I’ve been a dutiful loving daughter, but the stress on my marriage is showing. My kids are fed up with me running around after her & now my health is in decline!!!
Mums 88 - she will have to live with the consequences of her decisions until a time where the safeguarding we put in place isn’t thrown back at us!
You
So sorry to hear all this, Tiller Girl. Without wishing such situations on anyone, it's nevertheless helpful to find others in a similar situation, if that makes sense & doesn't sound awful. Your reason for not wanting your OH to go into respite care is totally understandable.

Great that the colouring books work! If only my sister could find some activity that would keep him amused when bored, so she could get on with something else for a while - even paperwork. I think, in fact, she tried the colouring books some time back but either he couldn't manage even those or else decided they were "silly" too. Might be worth another try now, because he will most likely have forgotten the last attempt and could be more receptive now. However, drawing or art was never his thing in the past. I know you don't need skill per se for these colouring books, but I do wonder if it's harder for PWDs to take up something they've never done/had natural ability for in the past? There's no unconscious hard-wiring, if you like, to draw upon, and now it's too late to learn something new, even if it's simply colouring within lines & doesn't matter if you mess it up.

In his youth, my BIL played rugby so I think he must have had good hand-eye co-ordination. Sometimes, these days, he doesn't see what's right in front of him (thinks his plate is empty when there's still food on it, or can't see the dog that's on the end of the lead in his hand). But at other times he can surprise you. Last time I was over (May), we were walking through woods with the dogs. One of them loves to run after a ball and my sister has one of those ball-throwing thingies. Although BIL would lose track of where the ball landed, and not see it or think to pick it up if the dog dropped it at his feet, he was mostly very accurate at launching it from the gizmo. Even when the track narrowed, with deep vegetation either side, he managed to aim the ball straight down the track. So I wonder if that's because he doesn't have to think how to throw - he isn't learning a new skill. (Am not sure if they use this in the garden as well. Will check.) I may be talking rubbish of course - it might just have been a good day.

And thank you for your very kind offer for my sister to contact you. I'll ask her, although she has never been one for forums or social networking of any kind, so maybe don't hold your breath! :)
Hi.For people with dementia they recommend coloured plates ,mugs etc.My dad has a red mug which is easy for him to pick up as he sometimes struggles with a China mug(motor coordination).Plus he only ever wants”half a mug”.It is plastic.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,580
Yep ticked that box last year to no avail.
Maybe mums just awkward as it’s not as if she’s wasting away. Just mainlining coco pops, hot chocolate, puddings & cakes!
At least it’s calories!!!
 

sjm80

New member
Dec 20, 2017
2
Thank you!
The staff will be there to direct, reassure her and distract her. When you go and look at a place you could ask the manager how they would deal with this. If the staff know their onions they will say something like "Oh, hes just popped out to the shops for a while. Would you like a cup of tea?"
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Just to say, I've now passed all your very helpful comments, suggestions and messages of support to my sister, and she is most reassured. Many thanks to everyone - from both of us.:)

I'm going to stick around here because I'm learning such a lot, which may not only help my sister again in the future, but me too whenever I'm with her and her husband. Our "holiday" in Northumberland isn't far round the corner now... Not sure how we'll fit 3 people & 3 dogs in the car on top of (probably literally!) all the incontinence pants, bed protection devices etc, but where there's a will there's a way :D
 

Justmary

Registered User
Jul 12, 2018
83
West Midlands
Hi Jenni, I am in a similar situation to your sister. My husband was diagnosed 4 years ago, will not stay at a day centre and thinks that he's perfectly ok. So all of the replies to your post have been most useful and I want to thank you. I am continually amazed at the wonderful people here on TP. I am also 64, my husband is 71, and my sister who helps me is called Jani! Please keep posting. Hope your holiday goes well. Mary
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Hi Mary. Some coincidence! I really feel for you, but pleased all these comments have been helpful to you too. TP is great, isn't it?

Recently my BIL asked my sister how old she was. After she told him, he said, "I'm 400." When she gently suggested nobody lives till they're 400, he said, "Oh, I suppose not. Well, I'm over 300 anyway." He was confusing age with the cricket scores, which she'd been explaining when he was watching the test match. Yesterday he asked her if he should go to the doctor in case he's got dementia.

Very occasionally he has more lucid moments, when he understands that she needs a break. Although he quickly forgets such conversations, something must stick, because at the moment he accepts the Thursday Day Centre routine, albeit like a sulky toddler who doesn't want to go to nursery. She knows if she gave in, he would stop going. I hope you persevere with your husband regarding the DC, because although 5 hours off a week are way too few for my sister, they're nevertheless a bit of a lifeline and give her something to look forward to. Among other things, for the first time in years, she's managing to spend a little time with her grown up sons (from previous marriage) on her own, and have "normal" conversations...
 

Jenni_B

Registered User
Aug 24, 2019
104
France
Update: The Northumberland holiday went better than my sister and I expected :), thanks in large part to fine weather, a great cottage and good teamwork. BIL liked the cottage, although never managed to find his way around it during our 6-day stay. Despite it being a tiny 2-bed bungalow, each time he needed the loo one of us had to physically lead him to the bathroom (pointing or giving directions didn't work); sometimes my sister even had to show him exactly where the toilet was within it. On re-emerging, he couldn't find his way back to us (round a couple of corners) without help. Nevertheless, he seemed generally relaxed in the unfamiliar surroundings and in my company if Liz wasn't around. By the end of each half day, as anticipated, he couldn't remember where we had been and what we'd done. Bed protection worked! My sister and I even managed to have a few laughs, which was an unexpected bonus.

This Tuesday a social worker visited for the first time, to undertake mental capacity & care needs assessment for BIL, and Carer needs assessment for my sister, who is desperate for regular respite. The meeting plunged my sister into deep despair - not least because the SW's communication skills didn't seem up to the task. I've listened to a recording of the conversation and at times it's quite hard for me, never mind someone suffering from mid-stage Alzheimer's, to follow her.

She decided that BIL does have mental capacity. While this wasn't a surprise, it's impossible to tell how she came to that conclusion - or indeed if capacity was formally assessed at all. If I've understood the Act correctly, it should be assessed only for a specific decision at a specific time. So I was intrigued to know what decision BIL would be asked to make.

In the recording, at no stage does the SW appear to check the 3 criteria which I understand are crucial for confirming capacity, namely that BIL:
  • understands the information relevant to the decision he's being asked to make
  • retains that information
  • uses or weighs up that information as part of the process of making the decision
Indeed, she seems to have already decided he has mental capacity before she asks him to make a decision: "So today's your opportunity, whilst you can still make that decision, to tell me what that decision is. Would you, if something happened to E, would you be wanting to go to residential or would you want to stay at home?"

We are somewhat dismayed and can't tell if the SW was inexperienced, poorly trained, simply not very good or representative of SWs generally. I would like to post a longer, verbatim extract of this section of their conversation but am not sure if that's allowed, even if no names mentioned?

A financial assessment is to follow in a week or two. But according to Age UK, the care plan should be discussed and agreed before a means assessment takes place. So far the SW hasn't mentioned when she might produce a plan, but I think my sister should request it prior to the means test. I'd be grateful for any of your thoughts.
 

Shedrech

Volunteer Moderator
Dec 15, 2012
8,540
Yorkshire
hi @Jenni_B
I'm glad the holiday went well

probably best not to post a transcript of the conversation, especially if the SW wasn't aware the recording was happening, just in case you inadvertently give a detail that will compromise their identity
 

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