PSP Association
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Falling a new hurdle

I feel so guilty today - mum has fallen twice this morning which is new first time was getting her out of bed and her skin is that thin just the pressure of me holding her hand tight to try and stop her falling has split the skin - I feel so guilty for causing her actual harm :( we get over this and clean up get dressed get mum down the stairs ( she still manages to do the stairs very slow with me in front of her on the way down and behind her on the way up ) and on the very last step she doesn't make it and falls backwards hitting her head again I tried to stop it but not quick or strong enough .

I didnt know what to do - no care package yet not sure what we really need. So who do you contact GP, dn or local hospice ? Ended up calling spar for the DN who got the nurse to call me she advised ambulance but mum refused so she advised to get GP to see mum , now waiting for home visit .

The good days are now few and far between .

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Oh Sophiejo, the bad days are rough aren't they? Don't feel guilty, that is so hard on yourself. This disease is difficult enough. Hope your day gets better.

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Oh, Sophiejo, you mustn't feel guilty! Falls just happen, even in care homes and hospitals, I'm afraid. Humans are so badly designed for stability - - two legs! Who thought THAT was a good idea?

I'm in the US so can't help with advice about available support services. I hope you are in one of those areas over there where care seems to be easier to get. Any posts by Kevin_1 will be worth looking back through.

Hang on. You are taking care of your mother, and she is lucky to have you. I hope the good days come back - that can happen. Things are in many ways easier for us now than they were last year. The falling was bad, and then it got better - partly because he walks less, partly because he isn't left alone, partly because I learned better how to anticipate and prevent the loss of balance. Meanwhile, I am sending hugs, love and peace, Easterncedar

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Sophiejo poor you and poor poor mum! Get the physios at the neuro team involved, request a hospital bed (for downstairs) if there's space through the neuro team. Stairs are a no go in my book with Psp patients, I used to do the stairs with dad, was an accident waiting to happen! If your mum isn't a patient of the hospice get her referred urgently via the GP! You might also think about continuing healthcare, district nurses or GP or preferably hospice can get the ball rolling! You definitely need help and quickly x

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We have a hospital bed but upstairs we need to have a jig around and change the living room into a bedroom for her but trying to figure out how to get everything in there is going to take some doing ( it's a good job I like jigsaws !) we see the neuro team tomorrow and hospice next week for palliative care team will have to see where we go from there !

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Good girl

Jig it all round, trust me it's a no brainier x

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Best advise I can offer, is think from a blank canvas point of view, start with the bed, then try to fit in the furniture you NEED. You will be surprised what you can fit in. You can always turn Mum bedroom into the dining room. It's been done before.

Lots of love

Heady

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GP first SophieJo. Ask for referral to adult services and hospice. I actually went into our local hospice myself and asked about my hubby but they only took him in their day centre once a week. Great for me at the moment but your case may need different help. Keep on the case. Once you're in system there is help out there but you have to be a bit pushy, and of course distressed, teary, physically and mentally worn out and tell them all this and then they might move things up a notch. Sorry not too much instant help for you but have a go and see what comes. All the best to you and your mum. Marie

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It sounds as if you are doing what you can. Its all exhausting, physically and emotionally.

Its distressing to see how easily the skin tears now. Don't feel guilty. We've all been there.

Love, Jean x

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Hi Sophiejo, falling is terrible as they. Get hurt and don't need that on top of what's going on with them medically, I have suggested this before my brother has PSP and in the past hitting his head causing a brain bleed and if the bleed didn't stop it would have resulted in brain surgery, so my son suggested a head helmet which we got what a godsent it has been he still falls but does not hit his head to cause injury it also protects his ears and face. Falls and a helmet are a plus for them and you.

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