Why is it that the Multiple Sclerosis Society manages four centres across the UK offering specialist respite care for people severely affected by MS, yet Parkinsons has none? Shouldn't we as carers, family and friends be organising for this?
Or is there something I don't know about?
I''ve been looking all over for local respite facilities that might suit my wonderful, alert mother (73) whose 13 years of PD now places too much of a care burden on my stepfather (87). The local places seem mainly to cater for people affected by mental illness - which is not Mum at all. All she wants is care and the company of others who are interested and interesting.
There is a Very Real Need need for CareHomes specific to Late Stage Parkinsons. My wife has had Parkinsons for 15 years, is now falling on a regular basis. Several times a day. We have no help at all. In addition to the usual cuts, bruises, and shocks from falling, the last 4 weeks have seen a broken shoulder, dislocated arm, two periods of Hospitalisation with all the problems of the impossibility of maintaining pill regimes that this still entails, and on Christmas Day (5 hrs spent at A&E 16 miles from our home) a broken finger bone. The situation is intolerable, and there must be many in a similar position. The Parkinsons Disease Society sits on considerable sums of money, sufficient to provide at least one care home in each region. This would make a real contribution to sufferers, would leave the Society still holding considerable sums. I would like to float this idea, anyone interested please join in, post your comments, and lets see if this could be made a reality.
Thank you Rod for directing me to your posting. I am so sorry to hear about your wife. You mentioned that she has suffered for 15 years whilst I have only been aware of my husband's condition for 3. Perhaps I should be thankful when there are others, such as yourself, who are in a worse situation than me.
Dear Shackleton Enquirer, As a 'newbie' I've only just seen your posting of last August. You may be interested in my first posting which I got into a bit of a muddle with, but can be found under 'Carers' 'Respite Care Homes'. (I somehow became muddled up with Christina!) Keep searching that area if you've the patience. Briefly, I'm proposing that the PDS provide Parkinsons Specific Care Homes in each region. I believe it to be well within their financial capacity to do this. I agree with what you say: there is a very real need for such homes. I do not believe it impossible to achieve. Rod.
Dear Christina, Many Thanks for your reply. I responded initially to your post, but as a 'newbie' somehow took over your entire posting!!. Good luck with your problems: there are indeed many in the same boat. Within the last 15mins, the hospital has 'phoned and asked my wife (i.e. both of us) to go,- now!!- for a 're-appraisal' of the shoulder break! Oh Dear! More problems!. Rod.
Problem is, someone with Parky's who needs to go in a home isn't usually that smart or intelligent in terms of conversation. I mean, my Mum has had it 10 years now and you don't get much conversation out of her - mind you, walked her up to the pub the other day on the zimmer, and back. But my Dad looks after he and he's a fit and agile 82 years old, touch wood.
You wouldn't really say my Mum has Parky's to look at her, just that supreme old age coupled with a whiff of dementia from time to time. So I can't see why she'd need a home all for her type exactly, sorry if this seems a bit cursory.
Hello Clive,(and the other contributors) I thought the thread was about respite care homes, which I take to be a short term stay for the PWP, which would enable the carer(s) to also have a well deserved respite (or holiday?) I agree that most PWP's are far better if they are at home, and that applies to my wife(14 yrs with PD), but the chance for me to get to see family who live overseas, would be invaluable. For me to be happy for this to happen I would have to be convinced that my wife was in a home which specialised and understood how to care for PD sufferers. As has already been said - what about it Parkinson's Organisation?
23rd. January 2011: To Icarus, I do not agree that all people with Parkinsons are better off at home. My wife (15 years since diagnosis) falls frequently and often badly. There is absolutely nothing that can be done for this. She would be much safer in a place where experienced staff can cope with the injuries she suffers most times she falls. The last few weeks have seen broken bones, dislocations, severe cuts and shock. This evening she fell and ripped a large patch of skin from her shin. Blood everywhere. I am not able to cope with these. I am calling for the P.D. Society to provide from its huge resources a network of Nursing Homes for those unable to live safely at home. This is well within their means.
Fair comment, Rod. We and our circumstances are all different, so what suits one may not be appropriate for the other. In my case I retired to care for my wife, so it's a full time commitment which I couldn't do if in empoloyment, nor without the considerable help of professional carers. Whether the homes are respite, full time or a combination, there is still a high need for them and they have to be staffed by professionals who have an understanding of PD.
I am new to this forum but see there are some older posts regarding respite and care homes specifically for people with PD. Has anything moved on with this? I am looking for my father who no longer copes at home despite carers calling four time a day. My Mom is about to go into hospital for major surgery so we need desperately to find somewhere suitable for him. Anyone know of anything in the Birmingham area PLEASE?
Could I also please make the point that in an ideal world there would be respite centres/homes that catered for Young Onset Parkinsons. I was diagnosed 8 months ago aged 38. I have recently become so low as a result of the concomitant stress that I became clinically depressed which hampered my ability to deal with the PD. Having been not working I can't afford a holiday, but some kind of respite for a few days, just as a change of scene and the chance to compare notes with others would have been very useful to me and given my family a break from my woes. It might have been the place to get ones strength back. TT
Even a list of care/respite homes that have an insight into Parkinsons would be better than nothing and the lack of response to this thread by PUK.
I am currently in the position of looking for respite care with an institution, (hate that word) that does have some degree of expertise in caring for those with Parkinsons. Other than contacting each establishment individually and them telling me, of course we can, where can I get some real information on this????