Respite care

Hi forum members!

For the next edition of the Parkinson magazine we would like to write a feature about respite care. Has anyone had experience of respite care, either positive or negative, who would like to talk to me about it? If you would, you can either reply to this thread, or email me at [email protected]

We'd love to feature your thoughts and experiences, as this would be valuable information to our readers.

Many thanks


This is a bit late but I would like to have my say about Respite, its non existent in our area which is in Halton in cheshire.

The story goes that when you want to take a holiday you get in touch with Social Services and let them know, they then endevour to tell you that they will help you get a bed nearer the time.  Its fine taking respite we as carers are all entitled to a break, but what they dont tell you that its so stressful waiting.

So the time is getting nearer to the date of your holiday perhaps a week to go, and either the social worker can ring around to try and get a bed or you can.  Last October I rang round the decent homes in my local area, only because I wanted local so my family and friends could visit my husband while I was away.  A week to go and only a few beds but in a local home there was 5 which I though brill I would be happy if he goes there, I try to book it and get told a week is too early can I ring back in a few days, so I wait till 3 days before the date of my holiday only to be told the beds have gone.  This is where the stress comes in my social worker was on holiday so I rang every home in my local area and was upset not to find a bed, I rang the crisis team and they give me a few more homes just outside the area so Im afraid my husband had to go outside the area and the home was awfull, I would have liked to clean the room thoroughly before I left, and I did mention there were still dressing under the bed and someone came to clean but I was so upset as you can imagine leaving my lovely husband who is only 66 there.

My husband likes to browse the paper, likes his own space and to watch his favourite programs on TV.  In this home he was not allowed to stay in his room he was stuffed in a sitting room with people so much older and had no choice in what to watch on TV, there was nothing else to do!  I even took his TV in for his own room, he had fruit and sweets none of which was touched and visitors always found him in this smelly sitting room, all this upset the whole family and needless to say I felt so guilty leaving him there but I had no choice.

This was in October last year and Ihave had no respite since,  I feel so desparate at times but dont know what I can do to get a break other than to pay a live in carer but it would cost far too much.  My husband also has dementia and I am 24/7 a carer, he has very bad walking/balance problems having the parkinsons, the dementia sometimes has him up in the night, he is no longer able to shower,shave or toilet himself without help, he obvioiusly cant shop or cook or even get out of the chair himself and I feel so let down by the local social services and local councils.

On one of the forums I go on is a lady from Huddersfield who takes respite for a few days every 3 months, she is allowed to book a care home in advance, which is very nice and she goes off for her break in peace of mind and can relax, it would be so good to do this if only for a week twice a year.





Hi missmo,

I'm so sorry to read about you and your husband's experiences. I'm not surprised that you feel so let down, and this sounds very difficult and upsetting for you both. I have passed your message on to our Helpline team, to see what they can suggest to help - and they have said if you can give them a call on 0808 800 0303 and leave your number, they will call you back as soon as they can to discuss this.

Do you have a Parkinson's Local Advisor? If not our Helpline team can put you in touch - they can support with local issues and make sure you get the help and respite you need.

Take care,

Joanne - Digital team.