Not quite at wits' end - just need some reassurance please

[Vira]

Hello, I've been reading a lot of the threads here and I can see that there are some people are really going through some very hard stuff. My mum doesn't know that she has dementia and at the moment, it is not so bad EXCEPT that she is regularly hitting her alarm button, getting paramedics and neighbours out. Last week she hit it as she felt hungry and this triggered a call to her neighbour who kindly came and got her breakfast. Mum had forgotten that her carer was due to come half an hour later to make breakfast. Mum lives alone in her own apartment with carers coming in twice a day. I live 250 miles away and juggling work I try to get to see her every 4 - 6 weeks. I support her infrastructure as best I can ie online shopping, arranging finances etc.

My question, one that I am absolutely struggling with, is that after an event this weekend, (alarm triggered twice, visit to A&E, neighbours disturbed three times in one night and they are in their 70s) I called residential care home near me that I have previously checked out. They may have a room available soon. I know my mum doesn't want me 'to put her in a home', she says so every time there is an 'event'. We could struggle on as we are, but I am wondering whether sooner rather than later, so if there is a room available I should grab it, 'kidnap' mum (we would probably have to hire a private ambulance for the long journey) and just hope to goodness that she will settle in and probably forget her flat/home 250 miles away.

I know this situation is not nearly so anguished as many of you, but any advice would be so welcome.

Thanks,
Vira.

 

[opaline]

I think I would go for it if only for your peace of mind because you know she'll be safe and it's going to happen eventually anyway. There's a lot to consider though re finances, etc. I'm sure others will be on to offer better advice.

 

[Witzend]

If you can manage it, I think it would be good. It is nearly always better to choose the time, rather than wait for a crisis, when the need may be very urgent and the care home you like best may not have a room available. From what you say, it would seem that 24/7 care will soon be needed, if it isn't quite already. And neighbours can be very kind, and from experience I know will often help a great deal before venturing to tell you that it is all getting too much. I know how bad we felt, when elderly neighbours were being called upon a lot by FIL, especially since they didn't even tell us until after it had been going on for quite a while.

BTW, we had to 'kidnap' my mother to get her to her care home. We did not discuss it with her beforehand, since she would simply have refused to go. Although she was very bad by then, according to her there was absolutely nothing wrong with her.

 

[pippop1]

We said we were taking her out for tea.

 

[Delphie]

Hi Vira

My mum, like yours, needed supervision rather than care, so I understand how difficult this decision can be when the person appears to be coping. But it is just an appearance, and already the supports in place (the carer visits) aren't enough. The neighbours sound lovely but unless they willingly commit themselves to a certain level of involvement then anything other than an out and out emergency call to them should be out of the question.

So your options are upping the formal care arrangements or residential care (or having her live with you, but I'm sensing that's not something you're thinking about). The problem with the first option is that this horrible disease is so unpredictable. Just when you think you've solved one problem two more appear, and trying to keep ahead of this game is very tricky indeed.

Making the decision in favour of residential care before a crisis occurs has its advantages. As Witzend said, for a start you're likely to get your first choice, and having seen quite a few care homes, I can confidently say that standards vary enormously. There's also a case to be made for moving your mum while she still has the capacity to get to know people. My mum's made friends and has a really lovely relationship with the staff. My husband's aunt, on the other hand, went into residential care much later and will never get to know anyone there.

Like the others, we didn't discuss the move with my mum. Not honestly anyway. As far as she's concerned (even now, after two years in care) there is nothing wrong with her so there was no question of persuading her. So I lied and said we were going on holiday to a lovely hotel and that was that. In she went, there was a period of adjustment, and then she settled and her quality of life has definitely improved. As has mine.

That's my take on it, I hope it helps.

 

[Witzend]

We said we were taking her out for tea.

We went 'out for lunch', which was at least partly true since the CH had asked us to arrive for lunch, and very nice it was too - lovely tender gammon and mash with parsley sauce.

 

[Vira]

Thank you!

We went 'out for lunch', which was at least partly true since the CH had asked us to arrive for lunch, and very nice it was too - lovely tender gammon and mash with parsley sauce.

Thanks so much all of you for advice - it kind of matches with my intuitive feelings that we have gone as far as we can, and yes, sooner rather than later would be the best thing in terms of 'moving' mum. I just fear that it may turn out negatively because she is not a particularly sociable person, she likes her own space a lot, and a care home may feel so alien to her, and on, and on, with the decision paralysis.

I will be seeing her doctor this week and will start to 'demand' some more support; dementia seems like such a lonely disease for the carer(s), unlike others where support seems to appear like magic.

Take care all, and thank you again.
Vira

 

[pippop1]

My MIL was not a social person.

Never had people over, no friends to speak of or call and so on but after a few months in CH talks about "we" do this and says with relish "we live a lazy life" here.

The use of the word "we" seems to me to acknowledge some kind of group-living mentality. We have seen her talk to other residents a bit and they don't even argue about chairs as they don't remember where they sat down last time!

 

[angelface]

Be very careful not to include SS in all this, as they start talking about human rights, and asking if you have health and welfare POA.
When I tried to get my aunts into care, SS insisted the aunties had capacity to decide where they lived, when it was obvious that they could not manage at home.
In the end we had a crisis, and it was SS that did the taking into care, and putting a DOLs in place. Very upsetting for all concerned.

 

[Isabella]

Thanks so much all of you for advice - it kind of matches with my intuitive feelings that we have gone as far as we can, and yes, sooner rather than later would be the best thing in terms of 'moving' mum. I just fear that it may turn out negatively because she is not a particularly sociable person, she likes her own space a lot, and a care home may feel so alien to her, and on, and on, with the decision paralysis.

I will be seeing her doctor this week and will start to 'demand' some more support; dementia seems like such a lonely disease for the carer(s), unlike others where support seems to appear like magic.

Take care all, and thank you again.
Vira

I just wanted to share, that my mum was always rather anti social and liked her own space. Before she moved into the home, I made sure that the staff would let her spend time in her room if she chose, although they did say they prefer residents to eat together but wouldn't force her if she didn't want to. I was reassured by that, however, mum has been a completely different person since moving in, and has become quite sociable. I rarely find her in her room unless she's having a nap! So things might not be as challenging as you think, it's difficult to predict how someone will respond of course but my experience has definitely been positive - and surprising!