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Care Package

LindyLu

Registered User
May 14, 2013
5
0
London
Hello... I'm relatively new here and would like to know what the definition of a 'care package' is (if there is any such thing!!)

My mother is 91, has very little sight, poor hearing and mobility, is incontinent and in the last three months has gone from being mildly confused (at a level we could excuse because of her poor sight and hearing) to having quite advanced dementia. I am her only daughter (only child) and at the age of 53 I gave up work in January to care for her. We had previously had carers in for half an hour each morning and evening to help her with breakfast/medication/dinner but by the end of last year it was clear that this was no longer enough support. I had a full-time, very demanding (but not particularly well-paid) job within the NHS and all of my annual leave was being swallowed with taking Mum for various outpatient appointments (cardiology, audiology, ophthalmology, podiatry etc.) or staying home when she felt unwell. Providing Mum with the level of support that she needed, whilst keeping my head above water at home and at work, became impossible - so I left work and had all sorts of hopes of improving her quality of life and regaining a little of my own.

Three months ago all that changed. She became ultra confused and initially her confusion was put down to a UTI. Four infections later (UTI, foot and chest) and five courses of antibiotics later it is clear that Mum now has advanced dementia.

She has been 'assessed' by a social worker (who appears to suffer from chocolate teapot syndrome). Every now and then he calls me to ask how things are going. "Hello" he says, "how are things?". "Not very good" I say. "What does that mean?" he asks. "It means that every day is getting harder than the day before." I reply. "Ah well, I'm just ringing to say that as you self fund we can't provide any further help."

We self-fund as Mum's war widows pension just tips her over the edge in terms of income. She receives the lower rate of Attendance Allowance... an application for the higher rate has been pending since March. I receive Carers Allowance (which, as you all know, is a pittance) and I work for a local charity for 10 hours a week) so those combined incomes just put me over the limit for Income Support. We have lived in our privately rented flat for 50+ years, but it is in Mum's name.

Mum now needs to encouraged, cajoled and ordered (umpteen times) to get up, eat her breakfast, drink her tea, take her medication, get washed, clean her teeth, get dressed, drink her tea, eat her sandwich, go to the loo, change her pad, eat her dinner, get undressed, go to bed... Sometimes I manage to get her washed and dressed, sometimes around 4pm I give up trying.

She has become less and less communicative and friends find it a less than joyful experience to come and visit. Several times I have come home from work, having left her on her own, for only about an hour, to find the bathroom flooded as she had left a tap on. Have now removed the plug... but then her teeth went down the plug hole! We currently have an insurance claim in as the last flood brought down the ceiling of our neighbour downstairs. That's the second claim within a year as last September Mum let a con man in who made off with my laptop...

I have asked about respite care and was told by the chocolate teapot to go and look at a few homes and find one that would be suitable. He told me I should agree and date with the home and book it and then go back to him and he would arrange a financial assessment. This sounded somewhat backwards but I did as asked. There is a local home that accepts residents who have dementia. It is in a lovely setting and I liked what I heard and saw. I know someone whose mother is there and they gave good reports. And they had a vacancy! I went back to the chocolate teapot and was told that they wouldn't fund this home. "Why not?" "It isn't compliant." "Why isn't it compliant?" "I can't tell you that, you will need to look at the CQC website." I did and it said that this home was compliant. I went back to the chocolate teapot and then spoke to a manager. It seems my local council will only partially fund this home. It doesn't seem any more expensive than any others (£800pw) but Mum will (obviously) have to contribute her share, then the Council will chip in - but there will be a shortfall of about £178pw which would need to be paid by a third party. Me! I'm afraid I can't afford that.

The Council then recommended I contact another home... I did and they don't accept residents with dementia. They have recommend another... which I have already discounted having looked at the website. They have recommended another which is out of our immediate area, would be difficult to get to by public transport - and when I tried to call the home I was put through to a call-centre (presumably in Ireland) and had a long conversation with a girl who quite obviously didn't know what she was talking about.

Sorry this is going on a bit...

Mum has also been assessed by the local MHT, initially by an OT and then several weeks later by a psychiatrist. Mum smiled at the OT and politely answered his questioned about her mood. She did the same with the psychiatrist although I could tell by the way she answered that she didn't really understand his accent or questions which, again, centred around her 'mood'.

Following a brain scan, vascular dementia has been confirmed and the psychiatrist has recommended that Social Services should 'increase their care package', that Mum should keep taking the pills (Sertraline) for her mood, and that he will see her again in three months time.

The chocolate teapot has advised me that if I can't cope I should buy in extra care support and they will contribute. Since January I have had carers coming in for two hours a week and have recently increased this to four hours a week. Have now increased this to nine hours (two hours in Mondays, Wednesday and Fridays when I work and three hours on a Thursday to give me a few hours respite). I have to pay £16.50 per hour for our carers, but the chocolate teapot now tells me that the Council will only pay £12.00 per hour... and that as we have to pay the first £100 or so a week we still won't get any financial support.

So Mum's 'care package' continues to be me, myself and I. What I want to know is... is this normal or would it be reasonable to expect more support?
 

Jessbow

Registered User
Mar 1, 2013
3,522
0
West Hertfordshire
In my experience, its normal!

Hard for those of us that struggle by, because our now aging parents saved for their retirement. squander it, and it all gets paid for !