Respite Care?: Hello. We live in... - Multiple System A...

Multiple System Atrophy Trust

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Respite Care?

tingates profile image
6 Replies

Hello. We live in Norfolk, does anyone know of any high quality residential respite care places in the East of England where I can be sure my husband, who cannot walk talk, read or feed himself will be well looked after for a week or so?

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tingates profile image
tingates
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6 Replies

Hi,

I don't know any in the area but I will pass on a piece of advice I got from a social worker when I had to place my aunt into care.

Go visit lots of places. The one that suits you will just "feel" right. Others will be OK.

I used this philosophy myself and the home I settled on was the 6th place.

Paul

Yanno profile image
Yanno

Hello, again I cannot help as we are in Worcestershire but have you spoken to your local hospice to see if they know of anywhere. Also the guys from MSA Trust might be aware of places - I assume you are in contact with them.

Take care, Ian

FredaE profile image
FredaE in reply to Yanno

Generally speaking it is very difficult to get anyone official to recommend any sort of care. The best source is people who have actually experienced care locally. Like members (not committee) of Parkindon's support group or any of the other neurological disease groups.

Remember that places can change with changes of staff and management

I used to email anyone I knew with ill or elderly relatives. The questions I found most useful were first ; can you recommend? and even more important ; where should i avoid?

Remember MSA is a complex disease and not every care home can provide that sort of care.

good luck finding somewhere good

Freda

Yanno profile image
Yanno in reply to FredaE

Fully agree with you Freda. One of the ways we have squeezed recommendations out of 'anyone official' is to say - "if it was your mum (dad or partner) where would you go for excellent respite (or whatever)".

Good luck, let us know how you get on.

Take care, Ian

tingates profile image
tingates

Thanks for the comments. Trawling the Internet for possibilities and will go to visit a few. Leaving my husband in the care of other people is really difficult, it feels selfish, but necessary for my sanity

FredaE profile image
FredaE in reply to tingates

There is no room for guilt. There is absolutlely no way that you can do this on your own and keep your health and sanity.The more help you can accept, the better you can look after your husband

It is not easy to accept help but I think that getting used to it gradually makes it easier for both of you when more intrusive personal care is needed later.

Having (mostly) lovely carers coming into the house can bring a breath of fresh air as well as the all important chance for you to have a life of your own for a short time. While I was away a lovely person from the Hospice came in for two hours to read to Victor which meant that the time was a treat for both of us

There is a non means tested grant for carers ( or was) which can only be spent ON THE CARER. I spent mine on going Nordic Walking. An hour a week in the fresh air with people who were not involved with MSA. Kept me fit mentally and physically.

If the government thinks carers health is important AND is willing to put money into it - that shows how important it is.

best wishes

Freda

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