We need help finding a better solution caring for a relative with PSP. Or is there one?

[Outrigger]

I am new here. My sister has PSP she just turned 69 and was diagnosed with the disease about 2 1/2 years ago. It took the doctors a while to figure it out what was wrong with her. She is in a skilled nursing home because she can't be by herself. She doesn't like it, but she is safe. Is there anyway around this if you don't have the money to put her in a nicer place or keep her home. What do other people do? Yes, we live in the United States. Her son and daughter have tried to take care of her but they have to work. She need 24 hour care. The rest of us don't live near them. How can we help her?

[enjoysalud]

I had a son who died of PSP, May 4, 2017. As is usually the case, the symptoms needed to progress before a DX of PSP could be given. My son died at barely 55 years of age. We both live(d) in Los Angeles. He was working with LAUSD as a math teacher, and applied for DISABILITY RETIREMENT (when it was impossible to continue working), which he was granted, however his health insurance was not extended when he was put on DISABILITY. My son had to get his insurance from ACA (Affordable Care Act, popularly known as OBAMACARE). He was paying approx $550 a month out of pocket.

In the United States we do not have the same access to universal health care as in the United Kingdom or other countries. We either "pay out of pocket" or have zero asssets and medicaid takes over or we had the foresight to have purchased LONG TERM CARE insurance.

We hired a live-in young male Sunday night to Friday night. At the time we paid $750 a week. I lived close by and would come by several times each day for a few hours. I stayed with my son each weekend from about 4pm on Friday to 8pm on Sunday.

You state that your sister is being cared for in a skilled facility. That you live far away and that her children work and are unable to care for her 24 hours, as her illness requires.

I cannot tell you if there is a better solution to your sister's care situation, but I can share my thoughts. In the countries that have universal health care, skilled facilities are provided and those who cannot continue caring for their loved one (the illness has progressed) have the option of placing their loved one. On this site there are those who have done so.

As PSP progresses it becomes VERY difficult/challenging to care for the loved one at home. Some do. My son at the end could not walk, could not see, could not talk, had lost all his bodily functions, etc.

In a LONG TIME CARE FACILITY there are many caretakers who can SHARE the constant demands of caring for one with PSP.....especially at night. Your sister may NOT like not being home, but she has probably adjusted to the situation or soon will. Change is difficult for all of us. I would imagine more so for one who has a terminal illness.

If you find no other solution for your sister's care (EXCEPT WHERE SHE IS), I would suggest that you call her EACH DAY AT THE SAME TIME (find out from the facility the best time for her) and talk to her. If she cannot talk (she can hear) have someone hold the phone for her and share a 3 minute description of your day, tell her how much you love her, tell her how grateful you are that she is your sister. Her children who live close by can drop in at the end of each day for 10-15 minutes and give her a hug, chat a little, and tell her they will see her the next day.

Last, vote at the ballot box for a candidate that supports UNIVERSAL HEALTH CARE.

Margarita....Los Angeles, CA, USA

[Outrigger in reply to enjoysalud]

Thank you for your reply. Yes, the disease is horrible. I do talk to her each day. It is hard to understand as you know. She tells me how she doesn't like it. I have done care giving many times for family, but I was not the only one helping. They all could move until the end. It still takes a toll on you. It mentally and physically wears you down.

It is very noisy where she is and she has to share a room. She have no privacy, but they have to watch her as you know. Her daughter does visit and takes her out a few times a week. Her son maybe once a week. I guess this is how it's going to be. Sad

[Dadshelper]

Welcome to the site. It sounds like you are doing the best you can with the resources available.

Margarita has covered the nursing home options very well. I am not aware of anyone who wishes to be in one but sometimes it is the only real option for keeping a family member safe 24/7.

Try to not beat yourself up over what you can not do, focus on what you can do and that will be enough. No one can ask for more.

Ron

[bgentges]

Have you talked to palliative care or hospice? Not sure what the criteria are for them. Dad was on palliative care when he was at home, went on hospice about a month after he placed him in the nursing home. I don’t know if any other options. My father Has been in a skilled nursing home for the past 9+ months. Prior to have to dad placed into a nursing home, we had home health come to the house to assist mom in dad’s care most days of the week, my siblings and I came in the evenings and weekends to assist. My parents have a long term health care insurance policy they purchased years ago, that covers a lot of the cost for this type of care. We were fortunate that My mother was a social worker for nursing home for 30 years, she was aware of the hardships that come upon families when a loved one has to be placed into a nursing facility and took steps to help ease those financial burdens.