Follow
Share

My sister has primary progressive MS and is losing mobility along with function in her left hand due to purpose/essential tremors. We have been waiting over 3 years for SSDI and she is in the final round of appeals - keeps getting denied. A couple of months ago she started falling more and more. Finally, she couldn’t put any weight at all on her right leg without falling, so we made her go to the ER (she kept refusing to go to the doctor) - called an ambulance and everything. Turns out she had 2 fractures in that leg & didn’t know it. She was in the hospital for a couple of days, and then transferred to a skilled nursing facility. Her coverage thru her provider will pay until April 30, then straight Medi-Cal (california’s Medicaid) kicks in for the next 30 days, but she will not receive physical therapy. She is NOT ready to come back here safely and to be honest we’d rather she not come back here at all (for reasons I don’t need to get into here). They want to send her back here with physical therapist & occupational therapist visits, but my husband and I went through all of that with my mother, and we refuse to turn our home into a nursing home again. How do I force the issue to keep her where she is or to send her to an assisted living type place when it is clear she can’t safely care for herself? SSDI approval has been a nightmare and she still has not been approved. She clearly needs help - and it is more help than we can give her. I have not yet asked if they have done a LOC assessment - the SW tried calling me today, but I was at work so I couldn’t talk. I don’t know what our next steps should be. What are her options? She requires more care than we are able or willing to provide at this point, and I need to know what to bring up to the SW when I speak to her.

This question has been closed for answers. Ask a New Question.
Unsafe discharge, rinse and repeat. She will not have 24/7 caregivers at my home. Who pays for food and transport? You tell them you cannot support her. Did you declare her as dependent? That makes housing more awkward. MS also includes mental changes. She is already a proven narcissist, expecting her to change is futile. The social worker is your new friend. She needs safe place with care and we can’t provide it. If they try to send her back, she has no money, no way to buy food, no means of transport or health care. OT and PT are not daily or 24/7. Unsafe. discharge. Don’t pick her up at facility. If no money she can’t order Uber or taxi. And medical won’t be thrilled to do ambulance at no cost.
Helpful Answer (4)
Report

Guess I’ll have to check into that.
Helpful Answer (0)
Report

Look into the eviction process in your jurisdiction, and start that process. Great if you don't need it, but get a jump on it.
Helpful Answer (2)
Report

IHSS is not an option because it brings all of that hell back into my home that i no longer want here. It turns out Home into a nursing home, it means her miserable self is still here jumping down the throats of my grandchildren when they want to play video games on OUR tv in OUR home. I’m done. She needs to GO.
Helpful Answer (3)
Report
jeannegibbs Apr 28, 2018
I remember fuming that in order to keep my husband out of a care center I had to turn our home into a care center! I understand perfectly what you mean -- you do not want help in your home. You want your sister in a safe place and you definitely want that to be somewhere other than your home! You are entitled to that. (I wanted my husband in my home -- a different situation altogether -- but I still got tired of living in a care center.)
(3)
Report
Eviction rules do apply so if she's established residency-meaning she's received mail at your address for 30+ days and if your address is listed on her drivers license/state ID then you will have to go through an eviction process if she won't leave on her own. There may be ADA rules you have to follow too if she is disabled. Medi-cal will cover a SNF but I believe for only a few months if she qualifies. That might buy you some time. I know you want her out but have you considered having her apply for in-home support services? It could lessen your burden, they will pay for an in-home caregiver.
Helpful Answer (0)
Report
jeannegibbs Apr 28, 2018
Why do you think MediCal only pays for NH for a few months? Isn't it California's version of Medicaid? That covers NH for as long as the person qualifies (doesn't win the lottery) and has medical need.
(1)
Report
Thank you Jeanne. I’ve lost so much sleep over this. My husband has been super patient and we’ve tried and tried to get her to see that we aren’t willing to have her stay here permanently. This is the same sister that refused to help me out when i was caring for our mother and now just assumes I’ll do the same for her. I can’t. I think the only thing that might put a wrench in this is if her level of care isn’t enough for a nursing home. I’m not sure. She has no income and is on general assistance for the time being. It’s a mess that no one else in the family is willing to take on so I’m it...as usual. I won’t allow her to be tossed out into the street but i need her to understand that this is her responsibility and not ours. I sent her an email outlining everything and how i feel and that it was time for her to figure it out - that my marriage is suffering and i just can’t do it anymore. She responded with laying on the guilt about “you’re family, i thought you’d care..” ugh. She just doesn’t get it. Thanks for listening- I’m so overwhelmed. Again.
Helpful Answer (2)
Report

You have no ongoing responsibility to provide a home or care for your sister. Coming up with an alternative may speed things along, but you don't even have to do that. Since she has been living in your house I don't know whether some eviction rules might apply. I hope someone can come along with experience on that.

Have you ever contacted the local office of the MS Society? They may know of resources for your sister.

Is your sister medically qualified for nursing home care? I assume MediCal covers that. What about other kinds of care centers?

What do you say to the discharge social worker?
* I am sorry but we are no longer able to provide care for my sister.
* I couldn't possibly provide this level of care.
* I hope you are able to locate a suitable placement for her. My home is no longer available.
* My husband and I will not consider continuing in a caregiving role.

Etc.

Repeat as necessary. You don't need justifications or explanations. It is your decision and all you have to do is announce it.

Other people on this board have been through similar situations. I hope someone will be along with personal experience.
Helpful Answer (4)
Report

Yes. What started out as a temp stay has turned into 3 1/2 yrs of no end in sight due to SSDI not being approved.
Helpful Answer (0)
Report

Did Sis live with you before this most recent hospitalization?
Helpful Answer (0)
Report

This question has been closed for answers. Ask a New Question.