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needing respite for my husband. - Carers UK Forum

needing respite for my husband.

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Why is it so hard to get respite care. I've looked after my husband for over 5 years with parkinsons disease and now dementia. Because I get help with paying for respite, I cannot book respite in advance. i need a break badly. My friend has paid for me to go to America to see my sister in September, but I cannot book respite until a month before the date I go. then if I'm lucky I'll get a place for him. If i don't like it, it's tough, because it's too late to then apply for another one. He had respite care for 2 days last year and on both days he fell, the second day they had to get an ambulance as he busted his nose. Earlier this year I was lucky and got him into a home for a week. he loved it. They can't pencil a date in as it has to go through the social services, but they can pencil a date in if i can do it privately. never mind that my husband has worked and paid all his dues his whole life. Nobody would send their child to a school or child minder that they didn't know, so why do it to old and disabled people. I'm so frustrated with the whole thing. I've been trying all day to get an answer from the social services, but no answer.
Hello Barbara and welcome to the forum :)

I feel your frustration !

When I needed my Mum (Alzheimer's) to go into respite for 5 days so that I could have a break I found that I had to book my dates around when our local residential care home could take her rather than book my dates and then find respite care and we were paying privately as Mum didn't qualify for any help with funding from Social Services.

I agree it's all so wrong ! But the main problem is just the lack of available places :(
The lack of respite beds should be tackled by the government. Otherwise they will have hospital beds filled with carers suffering from stress related illnesses.
Barbara the system IS so unfair. The government are so shortsighted. Social services don't think ahead or try to prevent carer burnout. They only help too little ad sadly often too late.

In my experience its down to the luck of the draw, if you get a good social worker that cares they'll move heaven and earth to help but if you're unlucky you're stuffed until they pass you on to another.

For the past few years I've been lucky to have a good social worker and I'm dreading losing her in the next month or so. She has managed to set up regular respite for my father, every seventh week, but even so I have to check with the care home and remind her a week before. Which of course makes arranging a holiday nigh on impossible. Its all down to bureaucratic rules that are the bane of our existence.

I must say though that you sound like you're in need of respite much sooner than September, what you need is regular respite similar to which I get for my father. If you could get that put into place then you could develop a relationship with a care home and possibly time your intervals so that one of your weeks coincides with your trip to America. I know its not an ideal solution but lets face it you can shout until you're blue in the face and get nowhere when a bureaucracy is standing in your way.

Regular respite, at the same home, has made a big difference to me because its allowed me to recover my sanity and strength. I stress, the same home as carees build up a relationship and trust with the staff concerned. Which of course allows you to relax properly.

Hope this helps,

Thanks for your support. I've now had a social worker visit and have told them to sort this out as soon as possible, they are getting me a week in June. Dave I would love him to go to the same home as he went the last time and have told them this. One person says I can book for the year another says I can't, so I have asked them to find out which one is which.. I wonder whether to approach my MP and tell them that this respite business has to be addressed, not just for myself but for all the other carers that have to go through this unnecessary ordeal.