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Do I have to care for my disabled sister?

5 answers | Last updated: Feb 07, 2015
An anonymous caregiver asked...

67% helpful
whisper1 answered...

I know exactly how you feel. I am taking care of my 49 year old sister who has short term memory loss from the oxygen being cut off 28 years See also:
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ago. My parents kept her in the house with absolutely no social activity, nothing for all those years.

My dad passed away 19 years ago, and my mom is now in an assisted living home with severe dementia. I have sole custody of my sister, as stated in the trust and living will, and my life as of 8/09 has not been the same.

I am single and support myself, renting a room in a house with my sister renting the other room in the same house. I had to quit my job, lost my benefits and I feel like I have gone over the edge. I have called every single place, person, etc., and no one on this planet can tell me what I can do! She does not qualify for group homes because she cannot cook or medicate herself, etc. I have no one else to help me and I really need to get back to work! Even brain injury facilities cannot help. Churches out, hospitals out.

I can't do this for the rest of my life.

Who can help?


More Answers
67% helpful
JMG2183 answered...

I am so sorry that you have to experience that. My younger brother was born with cerebral palsy and lived with profound mental retardation. He was the center of my family's life and - in my opinion - his existence (not his fault of course) ruined my poor mother's life. He died suddenly and without pain last May at the age of 50 and it's only now that I'm beginning to be honest about what a negative impact he had on my family.

You have the right to be free of your sister. You have the right to care for your son too.

Most people won't admit this. Instead, they will have some kind of sentimental approach to this question that has nothing to do with reality. Of course we should eliminate discrimination against the disabled, but glamorizing disability and acting like it's not a horrendous burden on others are nauseating.

If you want to talk, feel free to email me jmg2183@gmail.com. Good luck.


Robin59 answered...

I am sorry you are in such a tough spot. I am in a similar situation. My husband and I willingly took in my disabled sister when my mother could no longer do this. My mother had developed dementia, and living with her was very hard on my sister. My sister has no insight into her disability. For instance she thinks she can manage her finances. She can't. She came to us in debt after using her credit card like a debit card. Initially, she let us help her with this, but now gets her back up whenever we try to assist her. I can relate to the person who wrote about the sibling always sitting in the living room. This is what my sister was allowed to do at home as well. She did have a job, but quit it against our advice. Now she sits in the living room with my husband and I, and she is here ALL the time. We have a nice family room downstairs, and have told her she can sit down there, and no one would bother her. She does not take the hint. My husband is fed up. We finally told her that on the weekends we want the upstairs to ourselves, and we have her leave us to have our evenings to ourselves. There is a disability pension where we live, but she gets her back up when we mention this. I also feel like I don't want this for the rest of my life. My one sister has the responsibility for our mother, and the other has a disabled child so their hands are full.


Sodone! answered...

I am going through the same thing. 44 y/o sister. My mother, now deceased, coddled her, always made excuses for her and never disciplined her. I am single and have to work to keep a roof over our head, food on the table and bills paid. She doesn't follow rules, eats me out of house and home and her hygiene is disgusting! She does the craziest stuff and when i ask her why she does it, its always the same, "I dont know." She even answers the door to people who knock when I'm not home which can be very dangersous. Then when I try to explain or scold her over breaking rules she makes faces and talks crap like a 5 y/o. Except she cusses. I am at my witts end and my nerves are shot. I am so fed up and not sure how much more i can take!!!


An anonymous caregiver answered...

My husband's 51 year old IDD sister came to live with us last year after her mother died. We had no clue what we were getting into. We did get her approved with DDA, and recently figured out how to get DDA to kick in before they're ready. The key is that even though she cannot live on her own, she is considered "independent" and she has no legal guardian. She lies and steals, and her behavior became increasingly disruptive before her hip surgery. Do due that and other issues, she really can't live with us any longer. So, as she is currently recovering at a rehab facility from hip replacement surgery, she cannot be discharged on her own. DDA now has to kick in. Let me know if you want more information.


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