I received these questions via email:
Based on what you understand about PSP, have most of the patients (whose caregivers want them to) been able to remain at home for the duration of the condition — i.e. is it possible for a PSP patient to remain in the home throughout the disease process — whether via home help, hospice and the like? I guess I’m trying to figure out for my mom — unless there is some crazy complication — it seems to me that she could remain in the home for the rest of her life — and any medical equipment that we may need down the line (oxygen, respirator?) could be equipment that we could provide in the home. (she has an excellent medical plan, so cost here is not likely an issue.)
Offhand, I can’t think of any equipment that couldn’t be provided in the home. Does this sound right to you?
(Of course, if she needed surgery, a transfusion, or chemo, or something like that, she would need to go into a medical facility….) But on the whole, from what i understand with PSP, she could, theoretically, remain in the home.
Do you hear the same?
* the patient weighs lots more than the caregiver, and the patient cannot assist with transfers;
* the patient requires 7×24 care (or monitoring), and the caregiver cannot provide this; (perhaps the patient is a fall-risk and must be monitored 7×24 for falls)
* the patient is incontinent, and the caregiver cannot deal with this situation; (perhaps because the patient wants to get up multiple times during the night)
* the patient is yelling and verbally abusive, and the caregiver cannot tolerate this;
* the patient has insomnia and often wakes up the caregiver; and
* the caregiver’s mental and physical health are compromised by providing daily care.
In our local support group, probably half of all PSP patients are in facilities receiving some level of care (assisted, skilled) or are at home receiving some level of care.