My husband was diagnosed with PSP over two years ago now but he had been ill for eight years before that. He is now in an excellent Care Home but although it means a 22 mile round trip three or four times a week, it was essential that we were convinced it was the right Care Home for him. This was the hardest decision of my life but having the paramedics out twice for me as my health was suffering meant there was no alternative. We already had night Carers but eventually coping 14 hours during the day by myself proved too much as he fell so often and we had frequent visits from paramedics to help get him up as he was too heavy for me.
My husband is getting excellent care with lovely, friendly, caring staff and the local Hospice are being so supportive visiting him and keeping a check on me too. He seems very settled and I enjoy our visits and feel more relaxed knowing he is safe as he now has two Carers every time he needs help moving anywhere.
My health is now much better and I recently held an Open Garden in aid of The Hospice raising over £2,000. This gave me motivation to do something useful and to come to terms with my life. We have always been a close couple and it’s very hard when you live apart. To start with, with the help of my children, we would bring him home at the weekend but we’re told it was unsettling him too much so now if there is a celebration we have it there with him.
It is taking a long while accepting the situation but I feel we are getting there, albeit slowly. I try not to think about where we are going. Taking it day by day is the only way for us as a family.
Biggles seems to me you are doing well. Having celebrations with him will make him feel he is not left out. Going to visit him as you do will be something he looks forward to a lot. He still loves you, just as you love him.
You sound very grounded for someone dealing with such a difficult disease and the heartbreaking decision of having your husband go into care - I fully understand when members say it is/was the hardest decision of their life. We're all trying to deal with PSP & CBD life (my hubby has CBD) one day at a time....but I feel always like I'm holding my breath and waiting for the next crisis!!
Congrats on raising funds for Hospice and getting your own health back on track. Well done, you.
Welcome Biggles to the site we all wished we didn’t need to join!! This is a great place for support and guidance
Sounds as though you have already been on one tough road. Good to hear you have found a caring home for your husband. But it must be so hard being advised not to bring him home again.
It sounds like you did home care as long as it was possible and then made the brave decision to let others take the strain. It's a difficult decision to make. When we took that step I felt some guilt, but quickly realised they were better able to provide the care.
Great stuff on the open garden... That must have been quite a crowd!
Wishing you both the best
Warmly
Kevin
Thank you all much for replying. I wondered what response I might get as it seemed as if I had chickened out of my responsibilities. Having read so many comments from the group I feel so much for all of you who are just starting out on this horrendous journey.
Our son has just taken me to visit my husband. It’s a lovely day and we were able to take him down to the Bistro for (thickened) coffee and soft cake, following a (wheelchair) ride round the lovely garden. He seemed happy today although the only way he can communicate with us is with ‘thumbs up or down’. Of course you never know from one day to the next how be will be.
Today was a good day and we felt happier on the way home.
By the way, I read that coffee is good for the brain with people with this condition. Has anybody else read this?
Biggles I haven't read about the coffee but I think I will drink some more now! I used to drink it instead of tea but for some reason do the exact opposite now! Time to get the caffetiere out again!
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Deterioration since Thursday
Is it time for nursing home care?
New home-hospice patient
