Care-home fees for respite care, advice please?

FairyElephant_2

Hello,

I'm hoping for a bit of advice for my Mum (and myself I suppose).

Gist of the situation is this:- Dad has alzheimers, lives at home with Mum as his carer. She gets carer's allowance at the lower rate, although has now applied for higher rate due to his deterioration, and been granted this to start from August.

Mum is not well. She has been taken 'to the end of her tether' caring for Dad (she's been put on anti-depressants due to this). She has high BP, cholesterol, diabetis, and is waiting for a knee-replacement. Recently she's had several bad colds & chest problems, which have laid her really low, and she's not coping well. Now she is having trouble sleeping. She is really not herself and I am now more worried about her than I am about Dad!

We have reluctantly decided that Dad needs to go away for a little while so that she can get herself better.
We've tried taking Mum away for long weekends, having Social Services visit several times a day to check on Dad, but that hasn't worked out very well as he needs more watching (is devious - tells SS he has eaten, taken tablets etc, when he's actually hidden them or thrown them away...). This would hopefully be better for him too, as he has now taken to refusing to bathe, change his clothes etc, and there's nothing she can do to make him. He's also refused to eat anything except for biscuits for several days (tomorrow it might be only cake, or bananas - who knows!). I used to be able to cajole him into doing things, but now he won't even do them for me, but we think that in a different situation he might do as he is asked/told!

Unfortunately he has always refused to go anywhere - been offered day-care centres, activity groups etc, but he won't go, and flatly refused to go away for a weekend so that we could take mum away - he is convinced he copes on his own (which he doesn't really of course).
The psychiatrist at the memory-clinic has already said that when Mum has her knee-op he will section Dad if necessary to get him away, as she won't be able to cope with him for a couple of weeks after being discharged, but I really think we can't wait that long - she needs a break from him NOW before she has a breakdown herself.

Sorry this has turned into such a long post! What I intended to ask was does anyone know what respite-care in a residential home would cost? Would Mum have to pay for this in full (she worries about money, so I'd like to be able to plan this side of it for her)? And how difficult is this to arrange? We have arranged for the Social Worker to call so that we can discuss the situation, but I'd like to be a bit fore-warned.

Thanks anyone, for your advice!

FE

McKneff

I cant help much but i just wanted to say 'hello'.
Its very tragic when this happens within a family.

i feel for you all, my brother aged 52 was diagnosed with ALZ and went rapidly downhill and i saw what it was doing. Unfortunatley it affected him so fast that he died within 2 years.

My own personal opinion is that it shouldnt cost a penny for your mum to have some respite from this. Its outrageous that there should be any charge at all. Will you keep us updated .

FairyElephant_2

Thanks McKneff. Will keep you updated.

I dashed out at lunchtime to see the Social Worker at Mum & Dad's. She is a lovely lady, but apart from reporting back to the memory clinic there's not a lot she can do - it all seems to lie in the hands of the psychiatrist.

She did have yet another try to convince Dad to go away for a 'break' - tried using the angle that Mum is obviosuly ill and finding it hard to cope, so needs a break from looking after him. His response was that 'she can go away whenever she likes' but that he has no intention of leaving the house. I know that it is not really 'him' but his illness - but he is so selfish that I could scream!

He's sitting there in a long-sleeve shirt and a thick sweatshirt - in this heat! - and TBH he pongs as he hasn't bathed for ages...but even any gentle suggestion that it is a bit warm and he might like to take his jumper off is just met with 'I'm alright as I am' - which seems to be his favourite saying.
I thought I made progress by getting him to have a drink, but soon as our backs were turned he went & poured most of it down the sink, then denied having done so!

According to the SW we are in the 'limbo-land' where he's not actually a danger to himself or anyone else, and even though he's obviously neglecting his own health & wellbeing, unless he either collapses and has to be taken into hospital, or does something violent or dangerous so he can be sectioned - she thinks we are stuck.

I hope to be there on Monday when the psychiatrist comes, but may be in hospital myself, so might have to just leave a letter for him, but I'm afraid that the SW is right and we are stuck.

I wonder what would happen if Mum had a breakdown? What would happen to him then? Or if she were to decide to divorce him (I know she won't, but some people in that situation might I suppose)? I'm tempted to tell the psychiatrist that if I find Mum in floods of tears again I will take her to live with me...and then what will they do about Dad? Sorry but I am so frustrated I just don't know what to do!

McKneff

thanks for the update, you made me want to cry (and in part laugh at the same time, i visualised you chucking a bucket of water over him when you said he ponged in this heat, no disrespect of course, but just trying to lighten the moment for you.
,
I feel for your mum and dad (and you of course) like you say, the whole family is in limbo land until he (god forbid)
hurts himself or sets fire to something. the system really is wrong isnt it.

Good luck with the psychiatrist, for want of a better phrase. Please keep in touch.

FairyElephant_2

Thanks again - I have had mad images of me tying him to chair and cutting his hair before! If I could get him in the garden I could turn the hose on him!!!!!!

weanie

My mum has vascular dementia and for a long time we had no help. I contacted her social services dept last year and they put in some assistance via cirect payments which I manage and mUm has a couple of people helping us for a few hours each week.
last Septmeber i requested a Carers assessment and the social worker came out and agreed to offer us vouchers which entitle Mum to 28 days each year respite in a home [we have to top this up with about £9 for each day's stay bu it is well worth it. She went ot a care home for the first time last October for 10 days and I had a break. We were sure they would not cope with her but she was apparently 'very good'. We have taken her there twice since and she seems ok about it if a bit confused and we leave her ther a bit like when we left our toddler at nursery school all those years ago. My mum was a 'keep myself to myself' sort of person and we never thought she would accept this arrangement but she is quite compliant.

Good luck - get a carers assessment soon

purple12

FairyElephant wrote: »

According to the SW we are in the 'limbo-land' where he's not actually a danger to himself or anyone else, and even though he's obviously neglecting his own health & wellbeing, unless he either collapses and has to be taken into hospital, or does something violent or dangerous so he can be sectioned - she thinks we are stuck.


I wonder what would happen if Mum had a breakdown? What would happen to him then? Or if she were to decide to divorce him (I know she won't, but some people in that situation might I suppose)? I'm tempted to tell the psychiatrist that if I find Mum in floods of tears again I will take her to live with me...and then what will they do about Dad? Sorry but I am so frustrated I just don't know what to do!

I would argue that he may be deemed to be a risk to your mother - namely there may be grounds for a Mental Health Act Assessment. Certainly the effect that behaviour has on the main carer is a part of the consideration of 'health and safety to self and others' that is the main criteria for an Assessment under the Mental Health Act (also known as 'sectioning' although personally, I don't like that term).

Also, the nearest relative (in this case your mother) has a legal right to request a Mental Health Act Assessment from the local Mental Health team. I would encourage her to do so if things reach a critical point.
Another more heartless consideration is that if your father is admitted under Section 3 of the Mental Health Act he would be entitled to free aftercare from the local/health authority. Of course, it's a horrible situation to be in but I would be very concerned about the primary carer's health and have taken it as a major factor when assessing people under the Act.

(just for the record, my job is partially to conduct and arrange these Mental Health Act Assessments for over 65s).

McKneff

good post there purple12, sad, but good

choille

Hi,

My sympathies. It is such a hard, difficult & frustrating disease for those who are around it.
I am not, but have a Mother who is now thankfully in full time residential care.
I did find the charities very helpful & knowledgeable ie Alzheimer's Scotland. If you google them you will find a branch in your area. Also Age Concern are very good indeed.
There will be a carers association in your locality - that info should be available from the Alzheimer's society. These people should offer your Mother &/or yourself some guidance & they are very knowledgeable on the whole exhausting scenarios - lack of respite, stress levels in carer's etc.
Unfortunately things often reach a crisis point before services (NHS) swing into action. It sounds as if you are approaching that point & your Mother certainly is.
I would definately speak with either Age Concern & the alzheimer's society & also your own or your Mother's GP.
The lack of service is scary & there is far too much pressure placed on carer's & their families.
All the best
Keep well - it is a very hard time.

Edinburghlass_2

There may be financial help via Dad's previous employers, union or similar? The services will help out for instance in cases like this.

McKneff

Was your dad in any of the services, there is usually help in that direction.