What would happen if ......

Jenni_B

Registered User
Aug 24, 2019
104
0
France
Hi. Me again. Hope you don't mind me raising another question on my sister's behalf.

For 8 years she has been sole carer for her husband, who has Alzheimer's, and is now at breaking point. He receives full attendance allowance. No nursing needs at the moment, but needs care 24/7. My sister now has POAs for both finance & health & welfare. Recent SS assessments have confirmed that her husband is eligible for help with his care (in good hosting mode, he expressed a preference for carers to "pop in" rather than residential care should anything happen to my sister), and that he is currently self-funding. SS are therefore closing their file on him and my sister for the time being. (She has had a carer's assessment too.)

My sister is sure she will not be able to cope for much longer and anticipates that her husband will need to go into residential care soon - possibly early next year. We are therefore at the point of trying to identify suitable, affordable home(s). As my BIL wouldn't be self-funding for longer than a couple of months or so, and my sister won't be able to afford top-ups, it looks as though a council run home will be the only option from the start.

But what would happen if my sister decides she can no longer cope, identifies a suitable CH (without involving the SS because of self-funding) but he refuses to go there and the CH deems he has mental capacity? (I doubt he would really have capacity, but depending on the skill of the social worker who would apparently carry out the test, he might be able to pull the wool over their eyes.)

My sister feels she may have to start trying to prepare him, explaining how ill she is getting and that she won't be able to continue looking after him. He will keep forgetting, of course, but she hopes that something might stick, over time. She knows him better than I do, of course, but my worry is this could backfire. Each time the subject is raised it's likely to cause him distress, which might result in kind of training him to automatically say No when the time actually comes. Any thoughts?
 

Rosserk

Registered User
Jul 9, 2019
396
0
I managed to find a care home that also did day care. Your BIL could start day care at preferred care home and later it would be easier to make transition to full care? This would also use up any money he has which is over the threshold, so check the care home falls in cost range for LA funding x
 

Jenni_B

Registered User
Aug 24, 2019
104
0
France
That's good advice - never even knew day care only was possible, to be honest. Thank you, we will investigate.
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
I think you ave a valid concern, but Im afraid that there is no way that you will be able to coach your BIL into saying yes. I know there is the feeling that if you keep on explaining then something might stick, but Im afraid that it does not work like that.

If you wait for someone with dementia to agree with something,, then you will wait forever, Im afraid, because the default response from someone with dementia is usually "no"

Social Services have a duty to do the "least restrictive" solution, which basically means that you have to prove that nothing else will work before they will consider a care home. So the best thing is to try him with these other things now (before your sister simply cant cope anymore) in order to tick the boxes. Dont ask him, just organise carers to come in to help with washing/dressing and getting ready for bed, plus arrange for him to go to day care. Present it as a "fait accompli" and just do it. If he accepts it then that will give your sister more time. If he kicks off then at least she can say that she has tried and it doesnt work.
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
That's good advice - never even knew day care only was possible, to be honest. Thank you, we will investigate.
I look after dad but not full time.He has carers in 4X a day which is the maximum allocated.He is self funding.
He has now had occasional overnight incontinence (bowels)overnight.I no longer do his personal care and nobody is there overnight.He has a hospital bed as he is practically immobile.(He walks or should I say shuffles with a gutter frame)But he has said “No”to respite ,daycare etc.
He has been deemed to have fluctuating capacity so he cannot be assisted into a home as he is deemed to understand things.So if he says no and has capacity he won’t be going anywhere.
The same with your BIL..

I have become ill(Oestoarthritus)So I won’t be taking dad anywhere in his wheelchair.
Try daycare first but if he refuses it might end up being a crisis which is where PWD seem to get more help.
 

Jenni_B

Registered User
Aug 24, 2019
104
0
France
@canary - Many thanks for this. I will pass it on.

My sister has arranged a live-in carer to give her a week's respite away, in early December. It will be interesting to see how that goes!
 

Sirena

Registered User
Feb 27, 2018
2,326
0
H

My sister feels she may have to start trying to prepare him, explaining how ill she is getting and that she won't be able to continue looking after him. He will keep forgetting, of course, but she hopes that something might stick, over time. She knows him better than I do, of course, but my worry is this could backfire. Each time the subject is raised it's likely to cause him distress, which might result in kind of training him to automatically say No when the time actually comes. Any thoughts?

I really would not do that. As you say, it will distress him, he probably won't accept it, and even if he accepts it one time, he will forget he's done that and refuse the next time it's mentioned. He does not have the capacity to make this type of decision and attempts to get him to do so will result in confusion and upset.

If your sister wants to find a CH placement I think she'd need to use some subterfuge. When I moved my mother to a CH I did not mention the move to her at all, she would have been distraught about leaving her cat behind. I told her she was going on a short break in a hotel and she accepted that.

Maybe your SIL could arrange a fortnight's or month's respite in her chosen CH and see how he gets on. She could tell him it's just a 'holiday' (never say it's forever) and see how he gets on. If he likes and accepts it, it will be easy to slide into a permanent placement.

But whatever she decides to do, she needs to just get on and do it - he will never reliably agree.
 

Jenni_B

Registered User
Aug 24, 2019
104
0
France
@TNJJ thanks. What a depressing situation.

@Sirena - Thank you. Not sure my BIL would fall for the 'hotel' or 'holiday' line, but we can but try.

Quick follow-up question to check my understanding: Day care is different from a Day Centre, yes? My BIL attends a DC one day a week at the moment, which my sister is considering increasing to 2, and we've now found a council run home with a DC attached, which might be appropriate. I was assuming this to be different from day care, but perhaps not?
 

TNJJ

Registered User
May 7, 2019
2,967
0
cornwall
My dad goes to day care in a home..
Absolutely refuses to go to a day centre with “old people “.He is 86.:rolleyes:
 

canary

Registered User
Feb 25, 2014
25,048
0
South coast
Not sure my BIL would fall for the 'hotel' or 'holiday' line, but we can but try.
You would be surprised. I never thought my OH would fall for it either - he is very well orientated in the here and now, but I think it depends how it is phrased. The manager at the home was obviously well used to this turn of phrase and described it as a "hotel with nurses who would look after their every need"
 

Rosserk

Registered User
Jul 9, 2019
396
0
@canary - Many thanks for this. I will pass it on.

My sister has arranged a live-in carer to give her a week's respite away, in early December. It will be interesting to see how that goes!


That’s a good idea! Also the Council have to offer respite if your sisters reached breaking point. However he still had to agree. There are care homes that would have day care. Your sister could go with him and treat it as a coffee morning or lunch out. A couple of regularly visits could gradually be extended if of course it works out. It’s worth looking into day care at several homes.
 

Rosserk

Registered User
Jul 9, 2019
396
0
@TNJJ thanks. What a depressing situation.

@Sirena - Thank you. Not sure my BIL would fall for the 'hotel' or 'holiday' line, but we can but try.

Quick follow-up question to check my understanding: Day care is different from a Day Centre, yes? My BIL attends a DC one day a week at the moment, which my sister is considering increasing to 2, and we've now found a council run home with a DC attached, which might be appropriate. I was assuming this to be different from day care, but perhaps not?


Yes they are different. A home with day care attached sounds promising x
 

Jenni_B

Registered User
Aug 24, 2019
104
0
France
As ever, thank you all, so much, for your thoughts and advice. You are incredibly generous with your time, especially when most if not all of you are in the middle of your own particular nightmare. It is humbling.
 

Rosserk

Registered User
Jul 9, 2019
396
0
As ever, thank you all, so much, for your thoughts and advice. You are incredibly generous with your time, especially when most if not all of you are in the middle of your own particular nightmare. It is humbling.


I’m learning fast! And I’m glad of the distraction. Living with a person with dementia is a total nightmare, it’s like you’re never going to wake up! If I can help send me a private message anytime x
 

Raspberry Ripple

New member
Sep 28, 2019
8
0
My dad goes to day care in a home..
Absolutely refuses to go to a day centre with “old people “.He is 86.:rolleyes:
That made me laugh! My mom is a month away from being 94 and likewise she doesn't want to go somewhere where 'old people' sit round in chairs :)
 

Jessbow

Registered User
Mar 1, 2013
5,712
0
Midlands
My MIL refused day care at the dementia centre as "it's all full of dippy people"!

I shall always remember my now late mother going into care, straight from hospital ''until you are a bit better''

A lady was walking about , muttering to herself.

Mum says ''You didnt tell me Ena was going to be here'', [ Mum and dad, Ena & Syd shared a house when they were first married in 1953]

''hello Ena'' she says to the lady that was wandering about

''My name isn't Ena, its Irene'' said the lady.

''Isn't is a shame, (says mum) She doesn't even know here name any more''

Needless to say The lady's name was Irene, and Mum had never clapped eyes on her before.