PSP getting very tedious

[Escada29]

I am carer for my partner he has psp for 9 years it goes on and on feel like Im going out of my mind.

[Yvonneandgeorge]

Escada29 I think most of us are in the same boat, lots of people feel the same, but with this horrible illness, everyday is different, as I am sure you are well aware, it is horrible, but what can we do, one day at the time.

How far you down the line with this PSP ? My husband we think is at least 6-8 years with PSP diagnosed in May lasy year, he can't do anything for himself, his walking is bad, he will need his wheelchair soon all the time.

Big hug. Yvonne xxxxxx

[yellowmountain]

Escada29, I really feel for you. Do you have any respite help at all? What stage is your partner at?

My sister has been caring for her husband with PSP for 3 years now. He is at the stage when he is hardly ambulatory, and takes frequent falls, even from attempts to move a few feet with the aid of a walker. He is incontinent and wearing pull ups now. Hospice comes in once a day to bathe him and help brush his teeth and hair, but he needs so much more than that.

Words cannot properly articulate the level of hell one descends into when caring for a PSP patient. This patient is particularly difficult, having severe anxiety and obsessive thoughts. He rarely sleeps for more than 10 minutes at a time, and calls out for help several times an hour. Sometimes he calls for help going to the bathroom, sometimes it's something completely irrelevant, like a response to a casual conversation that took place the day before. Each time, his calls are urgent and incessant. Telling him you are busy and that he has to wait is something that he cannot understand.

My sister has a full time job, and cannot afford 24x7 care. This is doing her in, and her greatest fear is that, if she has to put him in a nursing home, she will have to sell her house to pay for it.

I am a cancer survivor. I have watched more family members and friends die from cancer than I can remember. But this... PSP is the worst disease imaginable. Especially if the person has anxiety and anger management issues.

Keeping all PSP caretakers in my prayers, to find some peace while traveling this journey with your loved one.

[abirke]

Wow just wrote you a long welcome and then promptly lost it!

So this time I will brief it up by stating that with all of your experiences , you must have a lot to share! Please feel free to do so as well as cry and vent. This site can get us through alot of wicked bad days. I am most grateful!

Again, Welcom, AVB

[Katiebow]

PSP seems like a prison sentence for sufferer and carer, more support needs to be offerd as too much for a carer to cope with alone.

[Escada29]

Hi

Thanks for all the replys. I think after reading all the horror stories I must be quite lucky because my partner is quite a good boy really he doesnt demand or be rude and he sleeps all night and we dont have to put pads on him so much now as the incontinence nurse suggested a few diet changes which have helped alot no more horrid mess all down his legs anymore which is good. He watches the TV alot and when he needs a wee I just bring him his plastic bowl and stand him up saves getting him to the loo each time. His walking is very unsteady and I have to help his feet along by pushing them with my own feet as he gets stuck alot. Going out I use his wheelchair try to go out to town or the seafront saves being stuck in all the time. Getting in the car is a bit of a struggle but manage it. Eating is very messy and comes out the side of his mouth a bit but he seems to enjoy his food, coughs alot on drinks but will not listen to any advice over this and certainly wont have thickeners. I guess he does very well considering its 9 years now it just seems to go on and on like it will be like this forever. I have 9 hours homehelp a week and 4 of those hours I go out on my own.