I care 24/7 for my wife who is now 10 years into her condition. I get occasional breaks of a few hours when my children can help but of course they are busy with their work and lives. I had a carers assessment and at the end of it I was told they could cover the cost of a respite break of about 5 days. I presume this would mean placing my wife in a care home. I really don't want to do this. She worries a lot and gets depressed and I think she would hate going into a care home. I would much rather have a regular respite break of maybe 4 - 6 hours a week so I could meet a friend or go to see a film. I have heard about people getting such regular breaks funded. I find the information on local authority support for carers to be very opaque. I don't know if entitlement is clearly spelled out anywhere and they should be applied everywhere in the country or is it all down to what the local authority can afford.
Also, if I were to get the council to pay for a regular break of a few hours, would they arrange for the carer to come in or just provide me with the budget?
Hi
@Hubbie
Yes I feel for you.
I'm in similar position.
In my area, when my OH was first being dealt with by the Memory Clinic, the LA Adult Social Services gave me a booklet called "Your Guide to Independent Living, Support and Care Services" sponsored by the LA and a company/charity called CareChoices. It's updated each year. It contains info about getting out and about, staying independent at home, managing increasing health and support needs, housing, paying for care, etc., etc. Maybe your LA has something similar? Worth asking. Some stuff helps and some irrelevant, as you'd expect.
Anyway it was the LA that put me on to our local branch of the charity Mind. They offered me 3 hours respite per week - to be taken in one block, at a time of my choosing, between 9am and 5pm weekdays, and they would then try and find one of their people to meet those hours. I chose Weds mornings as it suited me to go an play tennis with friends (old codgers like me) for a couple of hours (subject to the weather) (we play outside in a local recreation ground where there are 6 courts) and still have time to pick up a bit of shopping or get the car MoT'd etc. I could book extra hours if needed, if I give sufficient advance notice, and they have someone available. This was all free to me, as the LA paid Mind a fee for this. The sitter did various activities with my OH - music, poetry reading, going through magazine pictures to talk about, memory card, old photos, etc
Well this last year the LA announced they could no longer afford this, and the service would be means tested - from last Oct. Result is that I have to pay direct to Mind. They've been charging me about £20 per hour, and I got a notice that from 1st April (not a fools' joke) that the charge is going up by 10% to about £22 per hour. result is LA is now only paying for those on low incomes, and thus they are saving money. Some carers have given up or cut down on times requested.
I find the respite invaluable. If I can't play tennis - eg raining, then I go and do something else as I still want the time "away" from it all.
There are also various other charities that may offer befriending services. Worth investigating in your area.
When I first got a sitter I stayed in to check that sitter was OK, that my OH got on with her and vice versa. The first time one of my friends got a sitter she took the time just to go to bed and catch up on sleep!
Best wishes. I hope that helps a little.
