Dad has been the main carer for Mum for the best part of three years now and it is really taking its toll on him. There was a brief period of respite last year when Mum broke her leg after a fall but her stay in a rehab unit didn't do either of them any good. Dad couldn't sleep without Mum there and Mum was worried that Dad wouldn't have her at home again. (Not a great deal of rehab took place either!) I think this experience is why Dad is resistant to taking a break even though he really needs one. Sis was trying to persuade him to go away for a couple of days on his own but Dad said all he would do would be to sit and worry about Mum. So what can we do? We are considering other options, perhaps taking both of them away with Sis and me taking on more of the care role so Dad gets a bit of a break. The only question is, whether or not Dad will agree.
In other news - I am running the Royal Parks Half Marathon in aid of the PSP Association. Please could you ask your family and friends to sponsor me at virginmoneygiving.com/Helen...
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Respite is so important when you have a full time caring role, but people can resist taking it for many reasons. Perhaps it would be helpful if your Mum's social worker or nurse was the one to suggest it to Dad. Or perhaps think of other ways of giving him a break like day centre, or sitting service so he can go out.
Hope your half marathon goes well.
Hi
I had no help whatsoever during the seven years of my husband's illness. I left him in a centre for a week to visit my dying mother but the experience was very upsetting for the two of us. The day centre once a week where he played Bingo and was in the company of other people was a great help to us both. My husband had always been a great Boules player and after much research I found a place where they held Boules for disabled people. He loved it. There is an organization which If I remember correctly is called "Time Out" where someone comes and looks after the patient for 3 hours a week free of charge. It was a great help for me to get out and do the weekly shopping.
If the weahter was good she would take him out for a walk with his three wheeled walker. All of these little things make an enormous difference to the Carer and also to the patient, they get to see other people.
Another option to consider is "the hospice at home scheme" where the person can receive respite care in their own home. Nurse/carers come to the persons home allowing the carer to take a complete break from caring duties. The carer can then choose to stay at home or go away for a break. Check with your local hospice, district nurse and social worker to see if this service is available in your area.
Another aspect to consider if residential respite is used is to initially perhaps only have a short period of time apart. Perhaps try an overnight stay or a long weekend just to see how things go. This will allow both parties to become used to the idea of seperation and having a different routine without too much anxiety at any one time. This time apart can then be gradually increased as confidence on both sides develops and then the true benefits of the respite care can be felt.
Decisions where PSP are concerned are never easy. I hope you get everything sorted so your dad can have a break.
With regards your run, I have been on and donated. Good luck with it. I am useless at running, so greatly admire anyone who does this kind of thing. All your efforts will be appreciated and my thoughts will be with you on the day.
thanks for the sponsorship. I don't need to tell you that the money will be put to good use. Pretty useless at running myself to be honest; my main aim is not to finish last!
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