My dad who lives with us, has been diagnosed with PSP last Nov (confirmed) and we have been providing care within the family for last 2-3 years since his falls onset. It took a long time for diagnosis. At present he is wheelchair bound. We provide toileting, showering, clothing and bedtime care. He still has some speech and can make his needs clear. Swallowing is harder but he still able to eat solid non-puréed food. He had some Botox treatment in one arm and the effect of that on him was wonderful. Now though he is stiffer than ever.
We have tried to maintain as neutral a family home as possible as highly emotional events seem to impact him.
Unfortunately my mum has terminal cancer and is coming towards the end of her life. We’ve managed care for them both but I’m really worried about what will happen to dad when mum passes.
I’m not sure how we can plan for this. We are getting adult social services involved and I’ve asked for him to be moved to a palliative care support team so that we can do more to manage his symptoms. I really feel like we’re running out of time but don’t know what else to do or how long we have with them.
Any help/advice would be appreciated.