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My 72 year old mother lives in her huge, rural home with my younger sister. My father recently died suddenly. My sister has never worked, is clearly mentally ill/disabled and has been supported and protected by my parents all her life. She has never been diagnosed, and receives no support, treatment or even disability payments. Over the years I've begged my family to get my sister help and figure out a plan for this unsustainable situation, but it's always fallen on deaf ears and nothing has happened.



Now that dad is out of the picture, I'm baffled as to how to support my mother while she's a package deal with my sister. Her plan seems to be to live as frugally as possible until she drops dead, then my sister can live off whatever tiny bit of money she leaves behind. This is no plan! What if she needs long-term care? And I do not believe sister can function on her own no matter how much money she has.



On top of all that, mom now has uterine cancer and I'm helping out with the care as best I can. I live about a seven hour drive away and work full-time.



I'm losing my mind trying to figure out what to do with these two. I'm the only other sibling, leaning heavily on my husband and one aunt for support. I can't take on care for these two people, and I'm filled with resentment, anger and dread about the situation. Does anyone have any thoughts?

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Your parents have sacrificed so much for your sister. Your mom has to start thinking about her own needs.

I’m sorry for the loss of your dad.

I’m very happy to see that you will not be assuming your mom’s role as caregiver for your sister. You couldn’t possibly take on this responsibility and hold down a job too.

I have a friend who did assume responsibility for her sister with special needs. She ended up deciding to quit her job and was able to be paid as her sister’s caregiver. The pay was extremely low and she could barely get by.

My friend’s sister died (Down’s syndrome and dementia at age 54) and she had a tough time finding a job after her sister’s death. She went through all of her savings and incurred debt.

It’s completely normal for you to be stressed out and feel resentful now, just think about how amped up it would be if you were your sister’s full time caregiver.

I wish you all the best and hope that you are able to talk mom into caring for herself and setting up the proper arrangements for your sister.
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I wish I had all the answers. I’m caring for my disabled brother. Who is in the same position as your sister. I’ve applied for all sorts of government aid for him, so it’s a start. He can’t live with my husband and I if something were to happen to my parents. So I’m trying to set a plan for his future as well as mine. Best of luck, and you’re not alone. Just feels like it. You’re resilient.
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Since your sister is young, she may not get SSI without proof of a disability. Same with Social Security Disability. If you can get the SSI, I would still try for Social Security Disability so she can get Medicare. She then have Medicare and Medicaid.

Your Moms illness is serious. She is not being fair to you or your sister by not allowing you to look into things for sis so something is in place if/when Mom passes. Sounds like to me Sis will need to be in a group home. Long-term care if a group home in not an option. This will eventually happen to my nephew because there is no one to care for him after me.
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Well it sounds like Joann29 has been there and done that! If you do not want the task of taking care of them - then a conservator or guardianship needs to be set up. Take it one day at a time and you will get through this. Blessings to you and yours
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Frustrated42 May 2023
I agree, Joann29 sounds like a pro! It's not that I don't want to help, but I'd like to maintain my role as sister, not guardian...and I'm older than she is, and she may outlive me!
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This is from someone who has been there. I have a physically disabled nephew. He also has a Neurological problem. He came to live with my Mom at 18, she was 80. Mom was not able to go thru the process of getting my Nephew help so it all landed in my lap. First I got him Medicaid for his health insurance. He had my sisters Life insurance that I was able to put in a "Special Needs Trust". This allowed him to apply for a Social Security Disability which he received. So now he has Medicare and Medicaid. My Mom ended up with Dementia, so nephew was put on the back burner. When she passed I then took on getting nephew some more help. Moms house was being sold so I needed to find him permanent housing. I called the Dept of Disabilities and they put me in touch with the State. The State pays most of his rent, he has a coordinator and an aide 5 hrs a week who cleans, takes him to appts and just out and about.

For now, Mom is #1. I think u know what Moms diagnosis may mean. If she passes, her SS stops too. What you do depends on how much responsibility you want to take for your sister. You may want to call Adult Protection Services in to help you. Tell them there is a vulnerable adult you have no idea how to help. She can't be on her own and being 7 hrs away and holding a f/t job, you can't care for her. You may have to allow the State to become her guardian. Because she seems to have no medical history, that is going to need to be established so Social Security Disability can be applied for.

I know if I had not have stepped up, my Mom would probably have done nothing. Its a mindset some people have not realizing someday they will be gone and then what happens to that special child.
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Frustrated42 May 2023
This is really helpful. My sister is already on Medicaid, so that's a good first step. A challenge is my mother doesn't like to admit how bad her situation is, and between the two of them, there is a huge hesitancy to get sister to a doctor for a diagnosis. But I'll keep pushing as it sounds like SSI is the next step.
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Yes. I have some thoughts on your situation. Let go of the resentment and anger you have towards your parents and sister.
Your sister clearly has problems and cannot manage life herself so mom and dad have been at it her entire life.

If you want to help mom and sister, start by having a sit-down with both of them. You talk to them, let them know your concerns, and offer to help in ways that will be productive. Then stop talking and listen.

Your sister would probably qualify for SSI if she's never worked and cannot manage on her own. You may be asked to be her conservator. This means that you would take on the responsibility of administering her funds.
It does not mean that you have to have her living with you or that you will have to give her money from your own bank accounts.

Help your sister apply for SSI. Help them find a social worker who can help set up homecare for mom.
Is there a possibility that your mother and sister would be willing to take in boarders to live with them? This would certainly help out with household expenses.

Your sister needs someone to take over her life, get her on some kind of disability, and basically be a life manager.
She also has to do some for herself. Like be compliant with the state and into some kind of counceling. She will also have to help with mom's care, though she probably won't be able to meet all of her care needs.
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Frustrated42 May 2023
I am willing and able to help, but I don't want to be her life manager, I can't deny it. That's where the dread and resentment come in. My mother has an appointment with a hospital social worker tomorrow, so I'm hoping that will be a good opportunity to get my sister on the radar of some kind of social services.
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