Struggling to cope

[LWCARAB]

So after getting a diagnosis of early onset Alzheimer's for my mum (63) at the end of last year, we had to sell up her house in France and move her back here. We rented the house next door to ours as it was the ideal solution know it couldn't be a permanent solution, 9 months later after forking out a lot more than her teachers pension covers on rent we ended the tenancy last week and she moved back in with us.

Part of this was a financial decision but also down to her not appearing to cope on her own even thought we fed and watered her pretty much all the time. We were indirectly recommend that she would have access to more care if we reduced her savings to under the £23k limit, we listened to this and bought a car and caravan so that we could all go on caravanning holidays which she used to love, this was a decision we thought long and hard about but felt it would be good for her and all of us as a family. This pretty much used up her savings on top of the costs of the day centre she's been going to, rent, bills and living costs of the last year. The other upside to buying a car meant that we dropped a finance payment so my wife could be drop her hours and be about for my mum much more. I should point out that the french housing market is terrible at the moment so we're not talking 100s of thousands of pounds here.

It feels like she's gone downhill much more in the last couple of weeks or maybe we just see it more. We've been trying to cope with hygiene issues and binning her underwear most days as the stains won't come out. For the second time in a week this morning she left out bathroom in a terrible state with excrement all over the toilet, floor and herself. She just doesn't seem bothered by it but eventually managed to get her to have another shower and cleaned everything up.

We were hoping to try and sort out some affordable sheltered accommodation at some point I'm starting to realise that she really needs something with more care even though I'm really against it.

Just worrying about all the financial decision we've made and now can't afford anything without council support, we can sell everything but seems like a bit of a waste. I just didn't think we'd be facing this so soon.

 

[marionq]

Sheltered accommodation will not be suitable at this stage. She needs much more than that. Have you had a needs assessment from your LA? If not contact them ASAP to arrange it. Your wife may also be entitled to a care allowance if she has reduced her hours and wages.

Does she go to daycare? Make enquiries about what is available as you often pick up good advice through contacts there and in Alz groups.

You should also ask her GP for a referral to the continence service.

 

[LWCARAB]

Sheltered accommodation will not be suitable at this stage. She needs much more than that. Have you had a needs assessment from your LA? If not contact them ASAP to arrange it. Your wife may also be entitled to a care allowance if she has reduced her hours and wages.

Does she go to daycare? Make enquiries about what is available as you often pick up good advice through contacts there and in Alz groups.

You should also ask her GP for a referral to the continence service.

No I don't think it is anymore but I just worry about putting my 63 year old mum in a care home, it just doesn't seem right if you know what I mean, she's so young!

Unfortunately we could only reduce her hours to 20 per week do she doesn't qualify for carers allowance.

She does go to a day centre but only one day a week as that costs £460 a month of her £900 pension.

We're getting an appointment with her GP tomorrow re incontinence.

 

[Jbob]

No I don't think it is anymore but I just worry about putting my 63 year old mum in a care home, it just doesn't seem right if you know what I mean, she's so young!

Unfortunately we could only reduce her hours to 20 per week do she doesn't qualify for carers allowance.

She does go to a day centre but only one day a week as that costs £460 a month of her £900 pension.

We're getting an appointment with her GP tomorrow re incontinence.

Hi

I know exactly how you feel as my Dad has recently gone into a CH at 64 years old. He was diagnosed 18 months ago and after a recent fall and hospitsl stay after developing a uti and wandering off his Alzheimer's deteriorated quite rapidly. He is the youngest there but some of the older residents are not as advanced in their dementia as he is.
It is hard seeing him there but deep down we know he is safe and is looked after 24hrs a day. Something my mum can't manage as his main carer. He too has continence issues and with keeping an eye on him and all his washing I know my mum and dads quality of life together if he was at home, wouldn't be as good. Hope you find a solution soon and do what is best for you all.

 

[Beate]

You have to pay £115 for one day of day care? That is daylight robbery, pure and simple. I do hope she at least receives Attendance Allowance to go towards those costs at the moment? Ok, a care home would be more than that, but it would be 24/7! It doesn't matter how old someone is, it matters whether a care home is the best move for them, and it sounds like it might be for your Mum, unless social services give you a fantastic and affordable care package.

I also have to point out that the fact that you bought both a car and a caravan from her savings could come back to haunt you as social services might very well class this as deprivation of assets. Whoever advised you to do that should really have warned you about this.

 

[la lucia]

No I don't think it is anymore but I just worry about putting my 63 year old mum in a care home, it just doesn't seem right if you know what I mean, she's so young!

Unfortunately we could only reduce her hours to 20 per week do she doesn't qualify for carers allowance.

She does go to a day centre but only one day a week as that costs £460 a month of her £900 pension.

We're getting an appointment with her GP tomorrow re incontinence.

For now you could address the continence problems by getting rid of her underwear and substituting pull-ups.

I did this for my mother and it made life much easier. She could still use the toilet to some extent and she treated the pull-ups just the same. But they prevented accidents and mess. I would issue fresh pairs as needed.

By getting rid of the original underwear it was both a done deal and couldn't be circumvented. For us it was life changing I stopped being the queen of bleach!

 

[HillyBilly]

You have to pay £115 for one day of day care? That is daylight robbery, pure and simple. I do hope she at least receives Attendance Allowance to go towards those costs at the moment?

I don't think that the OP's Mum is eligible for AA as she's under 65.

There would be PIP http://www.nhs.uk/Conditions/social-care-and-support-guide/Pages/personal-independence-payment.aspx but I don't think she'd satisfy the residency requirements yet as she's been living outside the UK.

I know there are many hoops to be jumped through to prove residency for returning expats who've been outside the system for any length of time, before they're entitled to anything.

If you've deliberately reduced her savings to under 23k in recent months then, as said, that could be seen as deprivation of assets and you might have to reinstate her savings to the "before" point I guess, or top up yourselves.

Have you got Power of Attorney in place for your Mum?

Good luck with the GP visit today.

 

[LWCARAB]

Yeah we can't get attendance allowance as she's not 65 yet, we have applied for PIP which was granted last month but at a very low level, we're fighting that as they've given her a score of 0 on the worst areas but paying out on mobility which isn't really an issue. Also her condition has changes a lot since they did the assessment months ago.

Buying a caravan came from discussing with her the things she wanted to do whilst she still could, that is one of the very few things that has put a smile on her face rather than the daily blank stare most people here will recognise. We had no choice but to buy a bigger can to tow it, it did help us in the sense that we saved some money so could reduce work to care more for her. We've said from the start that if we need to sell both to cover some care costs then we will, we're hoping we can have some fun times and create some good memories this summer at least, we're off away for the first time tonight in fact. Although hindsight is a great thing I stand by the decision.

Just to clarify she no longer lives abroad, and getting her registered back on the system here wasn't as difficult as I had expected.

We have sorted out power of attorney.

 

[Jbob]

Did you get anywhere with the GP re the continence issues? Home & bargains do pull up pants cheaper than most supermarkets or you could go on age uk website snd order online.

 

[la lucia]

No I don't think it is anymore but I just worry about putting my 63 year old mum in a care home, it just doesn't seem right if you know what I mean, she's so young!

Unfortunately we could only reduce her hours to 20 per week do she doesn't qualify for carers allowance.

She does go to a day centre but only one day a week as that costs £460 a month of her £900 pension.

We'

Wow that's a really expensive day care centre - I pay just over £50 per day plus transport for my mother.....

 

[nita]

Your mother needs a Social Services assessment. Care provided is based on need but the person who is cared for has to contribute if they have savings above about £13k.

You should ask the doctor for a referral to the District Nurses who have a continence service. They too will give an assessment and pads, etc. are provided free. Unfortunately, in my mother's case they weren't adequate and she has to buy her own. I order them online and try to get the best deals.

The GP can complete a form which gives your mother an exemption for council tax if she is "severely mentally impaired". This will give a reduction on your bill for the household.