... began thinking why can't there be similar centers for PSP (and other related illnesses) patients. Is there even such a thing? Home care, palliative care and even end of life care is not cutting it. At least not for me.
There has to be something more for our loved ones, for our families, for us.
I always think about becoming a nurse. Seeing the way my dad has been cared for (and I swear if it wasn't for my mom he would no longer be here) by some of these "trained professionals" this just can't be it.
My hope is to start small and hopefully help others for years to come.
Right now my family is dealing with my dad's illness but it is something I hope to persue.
#ventingsession88
Hope everyone can have a better new year!
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jessybx19
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I do believe Macmillan Nurses will help people who suffer from disease other than cancer
but that is only second hand information.Also Hospices will help in some places but a great idea for a place of our own where you do not need to explain to staff why the PSP sufferer does or doesn't do things.
Hi I can tell you any hospice will take a PSP patient for daily respite one a day a week and ill also offer a weeks respite care. If you contact your Parkinsons/PSP nurse she can refer you .Hope this helps. My husband has PSP and he goes to our local Myton hospice.
Hi, my husband has just started going to our local hospice. They have had PSP patients before, so know all about the desease. These hospices are not just for cancer, they deal with anyone with a terminal illness. Marie Curie are the same, they are there for end of life care and will look after anyone.
I know what you mean about the "so called professionals". I am very fed up with my husband's treatment by them. Our GP did not even know about the hospice!!! Thankfully, I was told about by another PSP carer. Now, with the hospice involved, I feel that someone at last cares! They even ask and care about me! Strange feeling, mostly I'm treated disdain at best, something the dog dragged in, is more the norm!!!!
Get your Mum to ask the GP to refer your Dad to their local hospice. S goes once a week, it does make a difference!
I hope you achieve your ambition and are not crushed by the bureaucrats that run our formal 'caring' services. I'm sure your local Hospice would welcome your help and it may be good experience should you become a nurse. My experience mirrors others who found the local hospice an oasis of people who truly 'cared'. I would not rely on your GP knowing about your local hospice, ours didn't, but an internet search will generally find your nearest facility. Our local hospice is nonresidential but offers day care and has all sorts services and activities tailored to peoples needs and abilities. They even had a pick up and drop off service, and when my wife could no longer travel they sent out workers to help. I can't speak too highly of the hospice service. I hope you have a similar experience, best wishes, Jerry.
I have had the same thought myself. Every time We brought our brother to a doctor or a rehab facility we found ourselves explaining the idiosyncrasies of the disease to the doctors, nurses and therapists. We would have loved to have a facility that offered the services of doctors, nurses, specialists and therapists with a working knowledge of this disease as well as home health caregivers way before it reached the hospice stage. I wish you much luck with this endeavor.
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Palliative Care, (Continued).
I am so tired...
Looking for info from my neighbours in Canada particularly Montreal if possible
Update on Mum
