Help/advice requested from carers

[Cath11]

Hello

I wonder if anyone would be kind enough to help me. I have worked for many years with people suffering from various forms of dementia and their carers (in a day care setting and also in a social service dept), and therefore understand what a dreadful disease Alzheimer's is, and the tremendous effect it can have on those who care for people suffering from it. I am currently studying for a masters degree and for my final year research have chosen to look at the best way for social service departments to support carers of people who suffer from dementia. If anyone has had any help from social services (and I know the help offered - if any - can vary a lot), could they let me know what has been most useful. For example, maybe the offer of respite, or a day centre place or even information. Your opinions would be really useful to me and would hopefully make my final piece of research more relevant. Thank you for your time, and I will really appreciate any help you can give me.

[Grannie G]

Hello Cath,
I`m sorry I can`t be of help as, even though my husband has had Alzheimers since, at least 2005, social services are not yet involved with us.
I wish you success with your Masters Degree.

[Brucie]

Hi Cath11,

just a few thoughts. My wife is now in a care home [since 2001], so our experiences are a bit dated [1999-2001]

First thought:

you need to separate provision into two groups: younger people with dementia, and the rest. Their needs are significantly different. There are undoubtedly far more in 'the rest' than in the 'younger' category, but the latter category is probably much less well served, and they may be the most challenging because of their young age

In our case we were not served at all by SS.

Some examples.

Day centres: all seem geared [understandably] to older people with dementia, considerably older than 65, the threshold for 'younger' people to fall below. We used a day centre 3 times before we were banned forever.

Respite: all are geared to long term planning of need. Younger families need to be able to give as short a period of notice as two weeks or less, because the needs of paid employment may determine that. I was quoted six months notice being required for my wife to take a respite place. Totally useless.

Home care: where the family member carer works, an hour or two of home care is useless. It may take that long to get to work. If that care is only available once a week, that makes it doubly useless.

... good luck!
There was no help that SS could sensibly give us.

[cynron]

My husband only had a C P N call to see him every 6 weeks or so. After a couple of years or so i asked for a carers assessment for me from SS i was fobbed off and told i did not realy need one. I persisted and when i was alloted a SW i was offered respite stays for my husband plus a Crossroads worker for one morning a week.

I think in some areas of the country help is not always offered as normal procedure. Cynron x x

[Clive]

Hi Cath

The biggest help mum and I got from SS was the telephone number of a private care agency. Lady from SS said SS were always short of staff and as we would have to pay SS for care it would be better for us to go straight to a private provider.

4 year later mum had fallen and was taken to A and E. The hospital in house SS lady said I should get an assessment from SS. Eleven weeks later SS had still not been (though I had reminded them) and I had to take the decision to move mum into an EMI home (which mum’s consultant had recommended) without an assessment.

Two weeks after that there was a message left on my answer machine at 3pm. Message was that SS wanted to speak to me about the assessment, BUT would I please ring back before 4pm otherwise the lady from SS would be out of the office for a week.

By the way the private care agency, which was run by a religious group, was marvellous.

CPN tried to get mum to go to a SS Day Centre. They did not have a driver who was assertive enough to get my mum (with her Alzheimer’s) to go on the bus very often. After a few weeks they said mum’s place had been given to someone else. We did not try again.

And the CPN did not come to see mum in the last 11 months before she went into the EMI Residential Home.

In my opinion the problem is not just that SS were not helpful. What I found really hurt was the fact that mum was seriously ill with Alzheimer’s disease and yet the cradle to grave NHS health care, that I had been brought up to expected, was not there to nurse mum. Somehow nursing Alzheimer’s disease is said to be Personal Care and not mental health care. And the Government of England say mum has to pay for Personal Care from her savings because otherwise it would be a “burden on public expenditure”.

Hope that helps. Possible you will find others are happy with the way they have been treated. Can only give you my experience.

Wish you well with your study.

[Skye]

Hi Cath

I'm in Scotland, so I don't know if my experience will be relevant to your study, but here goes anyway.

My husband was diagnosed 7 years ago, and until two and a half years ago I has no help from SS. By that time I was almost at breaking point, and I was given a carers assessment, thanks to the intervention of Princess Royal Trust.

As a result I was allocated 4 hours (two afternoons) of Crossroads a week. This is free, because personal care is free in Scotland.

My husband deteriorated quickly last year, and I was reassessed. He now has one day a week in a day centre run by Alzheimer Scotland at a cost of £5 a day. I was offered respite, and could have had it virtually straight away, but I didn't feel my husband was ready for that.

I have no complaints about SS, except that they never return calls. I have to go through PRT every time, but that does produce results.

Good luck with your studies.