Double Dementia - Nightmare..

[Sparsely]

Many of you were very helpful on here a few weeks ago. My elderly parent journey has taken a dramatic turn. Hoping someone can help again!

DM (91) has been looking after my DF (90,dementia, incontinent) . I was trying to persuade her to get carers in but to no avail. Now he is in hospital for falls (postural drop). She agrees it's not safe for him to go home & he needs a nursing home.

We've visited a couple & one seems OK. It is very expensive and he is self funding (1800 a week). We saw cheaper ones (1400) but care was insufficient.

DM is understandably very worried about money. I think they have enough to fund him & her to stay at home.

But the enduring power of attorney is lost and won't let me look for it. She's prioritised tidying up the linen (she has a hoarders house) and calling my Dad's hobby friends to get rid of his stuff (which I found very hurful - he's not been in hospital a week).

There are many other mean & hurful incidents - for example - she said to my husband that she wanted to know if my Dad was dying becuase if he wasn't she wouldn't be so nice to him. I won't bore you with the whole list, you get the picture.

This escalated on Saturday accusing DH husband of stealing vouchers , Sunday someone had let themselves into her house & left the wrong colour toothpicks in the bathroom. Today she said someone had left a bra on her bed she didn't recognised. She accused my husband of being there with my best friend and leaving it there (!!!) She was genuinely scared, I could tell.

I just don't know what to do: I need to get my Dad discharged somewhere suitable but she holds the purse strings and is very capricious. Does she really have capacity, I am asking myself. What should I do about her? I tried to talk it over with her doctors but there are no appointments for 2 weeks. She's unlikely to agree to anything.

I feel a bit overwhelmed and if anyone has anything sensible to suggest, that would be great :-)

Oh boy we've been there. FIL diagnosed with dementia which took forever. MIL not coping with him, calls saying can't cope. Came to a head when social services went around and found her wandering the house naked from the waist down. We moved them to assisted living and she fell off a cliff. Wanted to leave him, wanted to move back home to Newcastle. She went into respite for a break and then attacked the staff. We couldn't have her back home to FIL so they got mental health team involved. She had previously had scans and we were waiting for the result. They got an emergency diagnosis of dementia from TIA's and DOLS on her. She's been in a dementia care home ever since.

We were so busy looking at FIL that we didn't notice MIL was deteriorating. She's always been a bit strange in the things she says over the 30 years I've known her so it wasn't immediately obvious.

I would contact her doctor and say you are worried about dementia and her mental health as its getting worse. Age concern are also a good source of info.
Worried or concerned about an older person? | Age UK

Yes, happened to me too. Mum had dementia, Dad was her primary career. Mum went into hospital and we discovered how little Dad could do on his own. So sorry for you. Its a tough situation.

Was it an EPA or LPA? And if LPA was it
registered? If so you can request a copy from the Office of the Public Guardian. . .

Just be mindful though that she may be under a significant level of stress, perhaps if you double check she is eating and drinking adequately, sleeping ok,taking any meds as normal…she may well have something like a UTI. Even when someone isn’t that enamoured anymore by caring for a dependant relative, when that role is removed sometimes it can cause a bit of crisis…being suddenly on your own at home at the age of 91 can be a frightening experience

Thanks all. I've emailed the surgery now to see whether they think she should come in for an appointment and if they think she's fit to have financial PoA. (A doctor and social worker had a long conversation with her a couple of weeks ago).

It was an EPA, she told me. I did try the Public Guardian's Office but nothing was registered. I vaguely remembering signing something but it was probably 20+ years ago.

I called her this evening. She was supposed to be going to see my Dad in the hospital (we offered a lift, she wanted to take the bus). but said she was doing something financial which she was a bit coy about (probably clearing out the joing account or cutting me out of her will ) . She rang off very quickly for someone who had spent all day on their own. I emailed her and reminded her to eat, and warned her about scams. (I don't know why)

Trying my best to be the grown up here. I guess I'll talk to the discharge nurse tomorrow.

Thinking of you. This is such a cruel disease particularly when it makes someone suspicious of and angry with the very people who could help and love them.
Tha Alzheimer's Society are brilliant for practical advice and their helpline/phones staffed by people who have been where you are.
Best of luck.

Really just a handhold as I have been in a similar situation exactly ten years ago. Sorry you are going through this. We didn't have any paper work at all when things imploded. Maybe it was better having no POA; we just had to start again with OPG and guardianship.
We didn't lose time on a wild goose chase, which sadly might be the case for you.

I'd just offer this:

• Dementia/ Alzheimer's could, for long periods, make your DM present as another person, so DM version 2.0. DM 2.0 has potential to be worst version of herself. You may need to change your responses when you talk to this new version. It might shock you how you have to change tack.

• Potentially sabotage her online banking by 'breaking' her internet or switching the internet on only when you are there. Sounds extreme but it might prevent huge issues if left to her own devices.

I don't think I can break her internet. She does her hobby online and it means a lot to her.

She seems to have logged herself out of my Dad's computer by attempting a reboot Luckily I had already taken some photos of the doc where dad listed out his assets when I was sitting with him (I thought this might happen) so we won't be completely in the dark.

She said she'd paid my Dad's credit card bill which seemed sensible and went over to see him today, so hasn't completely abandonned him and maybe I was being unfair.

I've found a cheaper care home so maybe that will make her feel happier as she has more choice.

She still sounds pretty good at 91 if she can pay off the credit card … was doing her a disservice.

Oh she is amazing. @Mum5net and very independent, hates being helped. But I know what you mean about DM 2.0. She changed personality quite a few years ago. We used to get on really well when my babies were young and I loved hanging out with her but she just became really difficult and spikey. Everything was an argument. I thought at the time it was moving off anti depressants which she was on for years. I really grieved for my lovely Mum and I still miss her. I did wonder if I had actually grown up never really knowing her, that the antidepressants had made her someone she wasn’t. Now you say that I guess it may have been dementia. Ive grown to love spikey Mum too. But it’s not always easy. Did you find your Mum changed more than once?

Do not know if it has been mentioned but get her checked for a UTI.

They can play silly buggers with memory and personality

@Sparsely My DM's dementia was traceable form 70 - 91 yrs, however, even at 70 she did not have the bandwidth to be paying a credit card or getting on a bus independently.
DM's dementia advanced but when it peaked, to the point it needed medical intervention and sectioning, she became someone entirely different. She came off meds totally after a year but never returned and spent nearly nine years in residential care.
A year after her the blow up, she was a shell of her feisty Mk II version, but she retained a little bit of original sparkle in her eyes. She had no clue what our names were...
DMiL, on the other hand, went full on wild into DMilL 2.0 and never really mellowed. She was angry and frightened with her version of dementia. She hated having personal care so increasingly needed more staff to help.
Every version is different.
I think what I've learned is to realise that the new person the dementia patient becomes, while related to the original version, needs new and different responses from family members. Not because you are being uncaring or cruel, just that you are faced with bizarre behaviours that need gentle but sometimes firm responses in reply.