Do I have to care for my disabled sister?

15 answers | Last updated: Jan 05, 2016
A fellow caregiver asked...

Okay, I'm very frustrated.

My parents are deceased and I am taking care of my older mentally disabled sister. she's 40 years old. Truth be told, I don't want to take care of her but she is my sister and she can't live alone. My father passed this February and he was taking care of her. Ever since we were small, my parents coddled her, did everything for her, made excuses for her and did not teach her to be independent. For the past 25 years, her routine was to get up at 5am and stay in our living room and watch TV, she'd be asleep half the time and not leave until after midnight. She didn't like sharing the TV with anyone. My parents supported this behavior for 25 years, which brings me to this question. they would fuss at her for being in the living room but never made her leave. I've always advocated that she needed to be in a home. After my father passed, I contacted DDA to find housing for her, but more so to get her involved in activities outside the home. DDA informed me there is limited funding for housing so they are only considering those who have no one to take care of them. And I've told her when she moved in with us, that she is an adult, I will not treat her like a child, like mom and dad did.

Here's why I'm done. I have a 12 year old son. This has been an adjustment for him also but he's managing. Before she came along he/we had free reign to our living room. But because she has claimed our living room, he's upset that she is always in there. She'll let him watch TV but she stays in the living room. He said that he wants it to himself sometimes and he's tired of her being in there. I guess this hit home for me as I grew up with her behavior so I guess when she started doing it here, it didn't phase me. Yesterday, we had a family meeting. I told both my son and her that they had to share the TV. I told my sister if she wants to come in here at 5am, fine. She'll get the TV from 5:00 - 2:00 PM, my son gets the TV from 5:00 - 11:00 PM. I also told her she needs to vacate the living room at 7:00 PM. I told her she can go to her room, go for a walk go hang by the pool, whatever, just get out. Well, today 2:00 PM comes, I tell her to give my son the remote, She didn't do it.

I told her again and she threw it at him, barely missing his head. I made her get up and give it to him and she threw it at him again. I told her to apologize, twice, and she said "Sorry!" in a very mean way. So we got into an argument and basically she said that she's an adult an she can have the living room whenever she wants and that my son should go in his room and she doesn't have to share the TV. Of course we argued about that one. The point is, I don't feel comfortable leaving my son alone with her now. As a matter of fact, when he was 5, we moved back home with my parents and my sister. She was mad then when my son wanted to watch TV in the living room back at our old house. She actually pushed him into the coffee table and he hurt his back, not seriously, thank goodness. But she has gotten violent with him before over the TV and living room and I'm afraid she would do it again. My son is uncomfortable also. He doesn't want to go in there without me. He was apprehensive about coming into the living room after the incident. He followed me around the house after the incident. He didn't want me to tell her to leave the living room tonight because he thought she would get mad.

I emailed our social worker at DDA to ask her to look into housing for her and it is imperative that she gets it. I'm not jeopardizing my son's safety. Nor risk having him taken away from me because of her. (I'm a single parent).She may not do anything to him but I'm not taking any chances. I even feel uncomfortable.

We've also had arguments about money. She gets her SSI check every month and I told her she needs to contribute to the house. Again, because of my parents, she's never contributed anything to them. They never asked her for her money. They felt it was her money and they felt bad taking it from her so she spends as she please. She bought a $500 purse one time. Mind you, she doesn't know $5 from $500. That's when I took her bankcard away. She tells me I'm mean, I'm not going to treat her like a child and let her have her way all the time.

I don't feel comfortable with her in my house but she needs to live on her own and be accountable for something. With DDA funding unavailable, where else can I look for housing? And someplace I can get her in quickly? I'm the only sibling.

Sorry for writing a book. I'm really upset about this but I truly think it's best for everyone invlolved. Thanks for your help.

Community Answers

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 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?

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 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!!!

A fellow 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.

Llammalover answered...

as I'm reading all these it really hits home.... I'm terriedfied of my future because of this... the first story really seems all to familiar ... I'm 25 and my sister is 22 at a young age we all knew she was a little slow and because of that my parent's coddler her to this day... at 22 she's knows nothing of the life outside her room... she's fixated on her computer which all she dose is read fan fiction and watch anime .. she's never had a job or even been on a date... she's never had a bill to pay or real responsibilitys other than herself... I stay up many nights scared out of my mind, because my father who's the sole provider for her and my brother should anything happen to him she would be my responsibility and I already have a 6 year old son but the way things are going I would take not only her but from the looks of it my brother too...Im so scared sometimes I can't sleep I just stay up worried how long can my dad really keep going and what will happen when he's gone.... she has the mind of a child and my brother who's now 16 is following in her footsteps don't seem to have a future at all.... and I wishi knew what to do too

Jformk answered...

I too am taking care of my sister. Our mother passed away about four years ago. We live in Texas. My wife and I moved in with my sister and mom when hurricane Ike came through Galveston. Long story short, I chose to take on the responsibilities of care for my sister. She is the only sister and youngest of 6 kids. My other brothers aren't able to help much, but some are trying. Trying to get Guardianship of her but can't of her estate. I am disqualified for estate because of a 25 year old felony. Now the Judge has stated that he doesn't want the responsibilities of Guardianship of the Estate. Which leaves me with no other alternative or resources to help get someone to be her Estate Guardian. Is there any one that give me advice on what I can do? I am afraid (after reading these stories) that my sister will be taken and she will loose everything she has. (Note: I don't care if I am guardian of her estate. And the value of her estate is somewhat substantial.) I just want to take care of my sister and not have her go to some nursing home or worse. Can somebody please advise me in what to do?

A fellow caregiver answered...

All I can say to you all is put yourselves in there shoes. I am 21 years old taking care of my 19 year old disabled sister. No it's not the life I thought I would have but it's what God has given me. Yes it can be hard and challenging but imagine what they go through on an everyday bases. They don't get to have what we do. They aren't able to really have child or to marry. I'm sure they would love to have there own place and take care of them selves and to live a normal life and nothing would be wrong with them. Could you imagine if that was you who was disabled having your sibling feel like you are a burden in there life? You should be blessed that your sister isn't in a home with strangers and not around loved ones. Just think it could be you.

A fellow caregiver answered...

I have a 30 yr old son who is both mentally ill and deaf (the worst combination ever) and no one can help him. He does not qualify for anything fr om Persons with Disability and group homes can't deal with him. He is sometimes aggressive at home making we are all uncomfortable but at the same time it hurts our heart to leave him in group homes with strangers and have him walk the streets aimlessly. He is at home now and we are just taking it one day at a time. I don't know what the future holds but I trust God all the way. Meanwhile he eats the house down, constantly moves things around and is very manipulative. I guess this is our lot in life.

A fellow caregiver answered...

Ask your self this question, if you were in your sibling's shoes, how would you like to be cared for? By strangers, or by family? I would like to suggest family counseling as a start. Perhaps you can gain a mutual understanding with your sibling and as an added bonus she can get the help she needs with individual therapy as well. I understand your frustration, it can be extremely draining. I have a disabled sibling that I care for as well. But please keep in mind that they did not ask for their disability, and that the way your parents raised her is the core problem here. I hope things work out for the better for you, your family, and your sister.

A fellow caregiver answered...

Do I have to take care of my sister: Being that your sister is mentally disabled and receiving SSI, contact the Social Security Administration (SSA) tell them that she is unable to budget her money appropriately, refuses to help with rent, utilities, groceries, and your family cannot afford your living expenses and hers. Tell them to either make you "her payee" or they or DSHS has thirty days to move her out of your house. In the event that the SSA and DSHS shines you on so to say, then contact your State Attorney General's office and AARP for help relocating your sister to a state facility or independent living situation. Yes. You do indeed to help your sister AND your family.

Texastrouble answered...

I have a twin brother who is schizophrenic, our mother died in 2012, he never had a job, never cleaned up after himself, or knows anything about paying bills. I tried taking him into my home, that lasted 3 months. He never threw away his trash, he watched TV at all hours, and he wanted certain fast food. His SSI check was cut in half because he "lived with a family member and I had to buy groceries for the rest of us." My brother is a meat eater, my daughter and I aren't; meat cost too much. So unfortunately I had to place him in a nursing home, he keeps asking to get out and live with me again, it's just a big responsibility. Plus he stopped taking his 8 meds a day, which included psychotic med. So if your sister receives SSI and has Mediciad/Medicare for health insurance, I'd check out having her placed in a NH.

Sunflower77 answered...

Hi Jenettd,

I hear your frustration in your situation and emphasize with you. But my empathy doesnt give you a solution that you are looking for. I am the youngest in my family at 54, my sister is mentally disabled and deaf in one ear and had learning disabilities. She married a man 15 yrs ago. My parents, when they were alive and my brother were not happy with they way they lived. He appears to be mentally disabled as well but without a diagnosis.

Anyway, my Mom passed way recently and my sister lives 30 minutes from my where my Mom lived. My sister and her husband were living, free of rent, on the other side of a duplex. My Mom was on one side. So for 15 yrs she lived there and her husband and she basically destroyed that house. Even though she knew how to clean, she never cleaned that house nor did her husband. She, like your sister, would rather sit and watch TV all day and drink coffee. No motivation, never worked, has outbursts of anger from time to time. Being with her husband who is distrustful of doctors or western medicine, kept my sister from any wellness visits. His fears and distrust became hers. She loves him and he is her world. He works but recently, since my Mom has passed, he asked if he should put my sister in an institution. He is discovering how difficult it is to take care of her. When she lived close to my Mom, she would be at Moms house having her tantrums and outbursts and watching TV and coming and going as she pleased. Even if it meant going to my Moms house and walking in the front door which was my Moms bedroom. We had converted the front living room into a bedroom for her when she couldnt take the steps any longer. But my sister could not understand, no matter how often she was told, to stay at her house after 10pm. My Mom rarely got a goods night sleep.

Anyway, my sister is still married and my brother and I have tried to get her help over the years but legally our hands were tied since they are married.

In my opinion I think she needs to be in a home of some sort with a network of people that can be her support system and friends. The home would need to have someone that oversees her care and if there is any medication she needs, that she takes it. She never had this in her life, a support system or network.

I am single but I will not be her care giver. I do not want to parent her. I live in a different state and I have my own health concerns and I dont need the extra stress that she would cause. Sorry if this sounds harsh to anyone reading this. Sure I can put myself in her shoes but I have flown across country to help her and take her to a doctors office or get shoes for her club foot and she doesnt wear them...............and doesnt follow up with her meds. Plus her husband has been a barrier and he doesn't keep up with her meds. She needs a psychological evaluation among other things. She is in her late 50's and probably needs hormones. She is hypothyroid and he doesn't give her any meds for that, although she had a prescription for this.

I can go on and on but if you want chat off of this venue, send me a message on this and we can support each other. Thanks,

Willow57 answered...

I know life is tough, but my sister didn't ask for this ailment, downs syndrome. I have never given a second thought to having to care for her. Yes it is tough. I go without a lot. My husband is a trooper, but he wishes WE could just do stuff. I've heard it all but it always comes down to I will be there no matter what. She's my blood. She's my sister. Right now, after taking care of her for over 15 years, I'm watching her slowly die in the hospital. I can't imagine my life without her. I will miss her terribly. This is not a Christmas I will enjoy having. I pray all you people who complain of the hardship , that you can live with yourselves in the end. God put them in your life, for a reason. He put them in your hands for he felt you were the best suited to help. Take care of your angels.

Dr blabby answered...

My husband and I were not even married 4 yrs and had already been in marriage counseling - He is a narcissist with ADHD and I had my hands full. We are not kids. His Mom died at 86 leaving my husband's brother (57) alone - He has asbergers syndrome and has not qualified for any assistance except for Medicaid and 190.00/mo in food stamps. Our counselor advised us NOT to move this man in our home as the stress was already too great. Between him - my "challenged" husband and 2 neurotic dogs - I was at the end of my rope. I also drove my 3 yr old autistic Grandson to school 5 days a week -- maintained a business and held down 2 jobs. I moved out. I was irate that my husband's Mother KNEW she had not provided for this brother - stole all his money - and left him with no life skills. Nobody else in the family would help. I left the home - moved in with my daughter - and attempted to help from a distance. The brother kept sabotaging my efforts by not showing up for job interviews - or coming up with a million excuses why he didn't want THAT job. He had not worked in 9 yrs -- that job had been obtained thru his Dad to work nights (Dad is now deceased).. Long story short.. Mom laid such a guilt trip on my husband and he PROMISED her he wouldn't abandon his brother.. I asked him what about the promises you made to ME at our wedding?? He went ahead and accepted this arrangement without even discussing it with me - I had to move MY furniture out to make room for HIS brother's?? As of today -- I am filing for divorce. I cannot live like this and shouldn't have to at age 66. I raised 4 children ( first marriage) and deserve some happiness. It's a dysfunctional family at best -- and I can't "fight city hall" by myself.. My husband is a full time job -- demanding and extremely selfish. Attempting to discuss his brother fell on deaf ears. He would get irritated and snap at me anytime I would bring up his brother's name. He wasn't even MY brother!!! Do NOT move disabled people into your home unless you want the stress to destroy whatever relationship you already have. Mine was in trouble before the brother came. And now.. it's all over and I am exhausted. Good luck to you all. I wish my husband had listened to our marriage counselor.. She said.. DO NOT DO IT.