First I want to thank Robin Riddle for the link to the post that indicates the stages of PSP. After discussing with my husband, we figured that he was between stages 2 and 3, and one of the recommendations was to put the patient’s name in the Palliative care Registry (which I didn’t know existed) So I asked my GP and we had the visit today from the specialist who came to our house for the evaluation. I feel so much better now knowing that we have a competent team in place to support us as the ‘damn disease’ as my husband calls it, progresses.
Palliative care: First I want to thank Robin... - PSP Association
Palliative care
It was proposed Larry start with palliative care. On the first intake visit the nurse suggested hospice instead. Hospice is part of palliative care at the later stages of disease. Your husband may qualify for it. There are much more benefits being in hospice. Larry will be evaluating after the first two 90 day cycles, then ever 60 days after to see if he still qualifies for hospice. He could go off it then go back on it. You might ask about hospice. It is usually stated that it is only for 6 months at the end of life but that isn’t true. I’m in Philadelphia, PA. Didn’t know any of this. One benefit is respite care. If I am in no hurry when they have a bed open they will take him for five days to give me a break.
This is interesting, I didn’t realize any of this - going to look into it —-