Do I have to care for my disabled sister?
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.
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?
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 firstname.lastname@example.org. Good luck.
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.
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!!!
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.
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
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?
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.
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.
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.
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.
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.
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,
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.
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.
I get it, but I feel the opposite. My mother died and we voluntarily took on role of caregiver to my sister. since my father is in a home. It isn't always easy, I have young children and we all have to make sacrifices. We are all 45+, I am the youngest. BUT, after so many years of bein If I would ever have to, I would fight tooth and nail to keep her. She is strong and could do damage if she tried to, but she would never try to purposefully with the intent on causing harm. My children are so good with her. My friends are awesome and accepting of our new family unit. The least supportive is the other sibling. I feel there are control issues with that one. I am afraid if guardianship needs to be established, or if there is a will anywhere that names my other sibling as guardian, my sister will be the victim of this.. Other people have expressed this same concern to me. Caring for my sister isn't the hard part, it is the only thing that gave my mother peace, to know we would do this for as long as we are physically capable. And it is the only option, my husband is in agreement with me. She does her own thing during the day and makes little demands. There are physical health issues too, the hardest there is not being able to communicate when she's not feeling quite right. So it's up to me to be diligent and observant to those needs. I feel like we will all learn from one another and this is a good lesson for my children that will help them not be self-entitled, spoiled adults later in life. It appears my sister's disabilities are more severe and we don't face those particular challenges that some of you do, but we have ours, they are just of a different nature.
I cant believe what I am reading. I did not realize so many people were going thru the same thing and me and my family. If anyone has any suggestions to this scenario I would be so grateful. My mother, brother and sister share a house in Mississippi. My mother has been moved to a nursing home and doesnt know who we are. She is the owner of the house. My sister is severly mentally ill and she has not allowed my mom or brother in her room for over a year. She called an ambulance yesterday to take her to the hospital because she has run out of meds and the only way to get a refil when you use them more than you should is going to the hospital. My brother went in her room yesterday. She had C-diff and there is fecies all off the floor and the bathroom and bed. We cannot legally commit her but we are trying to find out how we can legally prevent her from returning to the house when she is released. Any suggestions. Thank you
Wow I'm glad I'm not the only one. My brother is 33 and has autism. I'm 25, finishing my masters. I have another brother who is 31, and his life is more stable than mine. I still live with my parents because I help take care of my autistic brother. I have made a lot of sacrifices in my life. I can't even work full time because my schedule revolves around taking care of my brother. I'm worried that I won't be able to live a normal life. I worry that I won't be able to get married or have children because the majority of the time will be taking care of my brother. My parents have a trust fund for him but they don't even have a will. I tell them they need to do it but my parents, especially my dad, don't think or worry about the future so much as I do. My dad keeps telling me," Don't worry." But I have to worry! It gets me so frustrated. My parents are both 60. My dad is the breadwinner. He has health issues, takes his meds, but he doesn't take care of himself well. My parents have done a lot for him. I just get frustrated when they don't seem to care about my future. Plus, my other brother, who is comfortably living his life, doesn't even help much in taking care of my disabled brother. I don't think I can depend on him in helping me take care of my brother who is disabled when my parents pass away. If I feel burned out now, imagine me when my parents are no longer able to take care of him. I don't know what to do.
I'm so glad I found this question and comments as I completely understand what you are going through. I carried a huge burden of guilt around for two years because I don't have any emotional connection to my husbands' intellectually disabled sister who is 20 years older than me. For 50 years she lived with my mother-in-law in circumstances I see repeated in the comments section by others (no therapy or behavioral counseling, coddled, low expectations regarding social behaviors, no consequences for rages, unlimited reign over the household including all-day tv, dinner as per her request, no limits basically). When my MIL was diagnosed with lung disease and dementia, my husband and I suddenly became primary caregivers and powers of attorney for both my MIL and SIL. I never imagined that in my 30's I'd be parenting a 50 year old sister in law, while parenting my own kids, and fighting for my own health (cancer). After floundering for two years trying to fix my SIL's behaviors that had been allowed for half a century, it almost tore me apart. My health got worse (cancer recurred), and my marriage was overwhelmed with non-stop conversations and conflict about my husbands' mom and sis. I was ready to pack the kids and just go. Anywhere but here is what I remember thinking. My oncologist intervened and called in social workers (angels on earth), who guided us. We moved my SIL into her own apartment less than a mile from us. It was hard for the first year. She basically dug her heels in and demanded that I take care of her because I was "a mom" and was "supposed to." She refused to eat, lost 80 pounds, burst her appendix, called police to report us for "stealing her soda pop" and called us at all hours due to her severe anxiety. Between being angry and frustrated with her, then feeling terrible about myself for feeling those things, I was a wreck and it affected my children. Bottom line, it had to be done, she had to live on her own with hired caregivers. A 55 year old female with limited social understanding and a severe inability to empathize, impulse control and rage issues and no behavioral boundaries simply can't coexist with children in the house. It's not safe for them, period. Eventually when she realized we weren't going to behave like her parents and give in to her tantrums, she began to get better. She cooperates with caregivers, eats, she is even smiling and laughing again! It feels like a miracle. Please don't wait as long as we did to admit we were drowning...it's ok if you can't handle it. Your own children must come first...your own health must come first. I wish I'd given myself emotional permission to set limits with her earlier. Please learn from my mistake, call a social worker, get her out of your house. I am still fighting for good health and those who love me truly believe the stress played a huge role in my cancer recurrence. My marriage almost ended. My SIL still isn't able/willing to understand why I don't take care of her and still calls relatives to tell them I'm a "bad person." I'm not. Neither are you. What I am: still alive and still married. Bottom line: don't let your health and your own children suffer because your parents didn't or weren't able to plan for their adult children's future without them. It's a terrible situation you're in, but you are not a terrible person for not being in a position to handle it safely. Love and blessings to you and all who've commented here. I hope my story helps someone.
Wow! You know, I now care for my brother. My parents passed away four years ago. When they first passed away, I put my brother in a group home. It was the best thing I could have ever done. You see, my parents were also very lax about setting up rules and routines for him. As a consequence he was upset about things like having to shower regularly, putting clothes away, taking out trash, and having his money his ssi money used for his fair share of living costs. When he was forced to live in the home he had to follow rules and routines. he rebelled and so I cut off communication for 1 week. The next time he had a fit i cut off communication for two weeks. Then he got it. His attitude changed and he became more compliant. Also he was enrolled in an Adult day program for developmentally disabled people. They work with him on people skills and handling his daily needs etc. I really think if you do both of these things you could see a big change in your sibling's behavior. Another thing i did for my own benefit was join Sibnet on Facebook. It helps to have support from people who understand.
I'm in a similar situation as many of you, caring for a sibling who has a severe neurological disorder. She's 43 and sounds very similar to the sister of the person who started this topic.
In regards to the TV situation, have you considered putting a TV in your sister's room? Or your son's. You can get them for $10 at Goodwill. Or can you put a TV in the kitchen, or convert another room to a second living room? It would be sad if your sister was put into a nursing home over a TV dispute. If you cannot control your sister all the time, image how someone may treat her who is not family and doesn't care about her
I've been helping to take care of my sister for 15 years now and here are some things that have helped. .
Nami.org -- Nami.org is a non-profit for people with mental illness, neurological disorders, and their families. I urge everyone to seek out your local organization. It's free. Some offer more resources that others, but the one near us in Illinois has tons of programs to help your challenged family member live a better life and be more independent to the degree they can be (this could range from getting a job to taking care of their daily needs like hygiene.) There are peer programs where someone who is successfully living with their challenges teaches your family member over a period of time how to live better. If you want to get your family member out, more social, learning life skills, how to cope, etc., this will help.
There are also programs for the family members, counseling, educational weekly classes. I got so much out of this program, but learning how to communicate without it turning into a nightmare was a life changer. They also teach you how to set boundaries, etc.
Therapy -- A lot of us probably have some resentment towards our siblings. Resentment that they got more attention growing up, were coddled, or that we're doing all this work and struggling while our other siblings or even parents are "living their lives", etc. It's a good idea to acknowledge these feelings and focus on blessing instead, so we don't take them out on the challenged sibling.
If they could, they'd probably change places with us in a heartbeat. I have to remind myself sometimes that my sister is a person, not a burden. The world is cruel to her and she gets treated bad enough without me adding to it. And I know she sees the lives of high school friends, family, cousins, etc. on FB. The marriages, children, jobs, homes, cars. I know that makes her feel bad about her life. Compliments, kind words, pointing out things they do well instead of things they're not doing, these can all mean a lot to someone who is already feeling pretty low.
Working -- I've lost many jobs because when emergencies come up you have to deal with them. There are a lot of doctor's appointments for challenged family members. Work doesn't care. What I ended up doing was learning how to create websites and becoming self-employed. I needed flexible hours and that was the only way to get them.
I would strongly urge anyone who is a caretaker and struggling, to learn how to code or create WordPress websites. Research in demand tech skills.
Ever watch or listen to Joyce Meyer or Joel Osteen? I tuned into Joyce Meyer by accident one day (she's a preacher, but sounds more like an older sister telling you how it is) it was exactly what I needed. A little hope, some faith, after an hour I was feeling good. Just remember, you're never alone. God is always there for you. This can help when you feel all alone in the world.
I hope this helps.
Thank you for posting this! It makes me feel like I'm not alone. My sister is 31 with Spina bifida and extreme executive functioning and learning disabilities. My parents are still alive. She lives with them. She is very difficult to talk to with her executive functioning deficits. Anytime you try to set boundaries or tell her anything but she's great, she gets angry. She too, has been coddled her whole life by my parents. They will never take my side if she is hateful or mean to me. It has gotten in the way of my relationships with my parents. I feel like they are a family and I and my husband and kids are not part of it. She is like a five year old. Yes, she didn't choose her condition, but she doesn't get to be disrespectful and rude, blame her disability and not get help. I am at my wits end too! I feel like cutting them all out of my life.
This is my first time knowing so many people are facing the similar problem as my family. It's a great relieved and such an insight for me. I'm 24, the second child and the primary breadwinner at home. My dad has kidney failure and need to be taken care of. My eldest sibling has schizophrenia and bipolar. She stays at home all day, contribute nothing to the family. Occasionally she gets violent whenever she missed her med. Three of the family members had been attacked by her once. My two younger siblings, 23 and 21 are taking care of my dad and eldest sister. We are all very inexperienced in this. It's really important to seek for support and professional help beforehand. Even though I'm not staying at home as the caregiver, I think a lot about the future. It might come one day that I need to be the caregiver. Most of the time, I feel worried about resentment among me and my younger siblings. If one day, my dad is not around anymore, I don't know if I should be responsible for my disabled sister's care. My youngest sister is already feeling resentful. I don't know what is right for all of us. It will never be equal anyway.
I will try to keep my answer short..I have a mentally handicapped sister in law that is "taken care of" by my mother in law who is her guardian. She like many of our family members is confined to one room in a house, she is supposed to take antipsychotics and doesn't. She is violent, Uses the bathroom on herself and furniture, and wants to eat anything she can get a hold of. Since she can't take care of herself we all try to pitch in. I have 3 young children she has attacked 2 of them and left scratches bruises I had no idea that she would harm a 2 year old. If something ever happens i hope another sibling will step up you have to keep your child safe if your sister has shown aggressive behavior in front of you imagine what might happen if you're not around....
As a mom to a special needs young lady I'm shaking my head. My other daughter knows that someday I will not be able to care for her sister and we have joined together to help our special needs child become more independent. In matters where she cannot, we have worked together to shoulder the work. In almost every story I have read, it seems as though the person with the disability lacks a network. Leaving someone to sit in the living room for hours on end to watch tv is not the answer. It is just a way of not dealing with the situation.
It begins with meds, community programs and involvement instead of resentment. Hire a sitter even if you can only afford 1 or 2 hours a week. It will really change your outlook.
I see in many posts what my children have gone through for years. One thinking the other is coddled. Actually, my "normal" child is far more coddled than the special needs one!
Tammy- I'm another sibling... Just like all the other that posted. I am the caregiver for my brother who is CD. Community integration and help is NOT that easy- #1 breaking a habit is NOT easy when they don't understand it. #2- Getting help from the government is a pain staking and daunting task.
I have gotten government help for my brother in multiple ways.... but the only reason I knew what to do is because I am a high school special education teacher who has been helping families do exactly this for years. Before my parents passing, they refused such services. Their refusal kept my brother in his own circle watch TV all day. I went to OVR first. Office of Vocational Rehabilitation will do free assessments. Do not decide your family member can't work or volunteer. You would be surprised at what OVR and job coaches can offer. Next- if the disability manifested before 21 years of age, apply for the "Independent living waiver." This allows them to continue living with you or independently with a in house support person to facilitate many things, such as laundry, helping your sibling clean up after themselves, or even just outings to fun places. (Only problem with this- It's a person who doesn't make a lot of money and it is difficult to find a person you can trust to take your sibling out. After going thru 5 caregivers, we quit. I would rather have my brother sit in front of a TV all day than have someone hurt him.) Next, go to your office of intellectual disabilities. They require proof from a doctor or Reevaluations (or IEPs) from school. They deny almost everyone the first time. I threatened to sue because I knew the law and the criteria for services. Once I did that, they magically accepted him. Once he was accepted, if i were to send him to live somewhere else, it would be covered. I have it set up for when we are not able to take care of him.
In the mean time.... the cheap caregivers... ah... you get what you pay for (or what the government pays for). My brother qualified for "cognitive therapy" due to his disability. Now, 2 times a week, a well paid therapist with masters degree comes in my home to work with my brother. I don't even care if there is growth; I want to see happiness. and he is very happy with his "buddy."
All of this trial and error didn't come easy!!! My brother fought me EVERY STEP of the way. He didn't want to go out with anyone and also pulled the "i'm an adult" card. I made him a deal- he HAD to try it once and didn't have to go if he didn't like it or didn't like the person. turns out... finally... the cognitive therapist is a winner and my brother loves him. They are "buddies."
The day to day struggles are still there. I love my brother more than life. But i miss our old relationship, before our parents died. I used to take him out for fun and we would bond... and i made him happy. Now- I've become my mother. We have 2 other brothers, but he wants no parts of them. I have tried to talk him into it...because GOD knows I could use their help!!! and i miss them!!!! But he gets strange about it... swears to me that he wants no parts of them because they never wanted him (this is true), so i never force him...would never force him. but if my other brothers were standing in front of him, he'd lie and say he wanted them. Makes me look mean and crazy. He lies a lot... about big things and little things. I don't know how my mom did it. I used to think my mom was making stuff up... but she wasn't. My brother will tell people things like he volunteers in an animal shelter (he doesn't) and how mean I am because I won't let him have sweets (neglects to mention that he'll eat the whole box and poop himself. He can have ONE a day... just not the whole box). Sorry- i'm off on a tangent...
Being a Special Education teacher and caregiver are so different. SOOOO DIFFERENT. Some days I feel like i'm drowning. I still mourn my parents. I mourn my old relationship with my brother.
I'd love to have a penpal or friend to vent to and vice versa!! Feel free to email me.
I am glad I am not alone. My family situation is not quite as far along as some of the experiences that have been shared on this forum. My wife is 39 and I am 42 and we have a 4 year old daughter. I also have a 45 year old mentally retarded (or disabled if you prefer that term) sister who currently lives with my parents (both 70 years old). My sister suffers from moderate to severe anxiety and receives no treatment (medication or counseling). Like many have stated, she lives a coddled life and grew up with excuses being made for her bad behavior. She is somewhat high functioning and knows right from wrong, but often manipulates others into getting what she wants. Nothing is EVER her fault and she has never been accountable for anything. When she throws a fit, she can be violent and terrifying. My daughter once hid in her room chewing on blanket during one of my sister’s outbursts. She is quite active in Special Olympics, Tennis, Exotic travel, and guitar music all funded by my parents. My sister used to work in clerical type roles in an office setting. However, my parents did not place an emphasis on the importance of working for a living. Gradually, her hours were cut back and eventually she was terminated for poor behavior and excessive absenteeism (Travel & Sports). She no longer works (collects SSI) and no real efforts are being made for her to find a new job (no position offered is ever good enough). I know my parents mean well, but they are enablers; by allowing my sister to live an artificial life far removed from reality. As a result, she has become selfish and arrogant with no empathy for others. Naturally, my wife and I quite concerned that she will not be able to function in any form or group home or assisted living program. In addition, my mother has refused any treatment for my sister and shuns the services offered by disabled adult service providers. She opposes putting mentally retarded adults into group homes and chastises other parents who take such actions. Recently, my mother suffered a heart attack, and this was wakeup call that some future planning was needed for my sister. The topic is generally avoided in discussion with my parents and this creates a strain on my marriage. My wife’s #1 fear is that my parents really have no plan for my sister and operate under the false assumption that we are going to care for her if something happens to them.
I have been worrying so long. My 55 y o brother can not take care of himself in a healthy way or manage money. He is diagnosed with BPD and has an old back injury that never got better despite surgeries. He has been a substance abuser since he was 12. He struggled in school and finally got it together enough to get a Bachelor's in Fine Art. Basically that was the last sort of normal thing he did. He was a junky and alcoholic, though I did not know it at the time. When I had my children, I realized he needed some kind of help, but he moved to another far away state and never kept in touch.
My father died about a year ago, leaving one brother and me as trustees to care for our youngest brother's financial needs at our discretion. My healthy brother lives across the country and I have been responsible for the day to day management of finances for my disabled brother and for my mother who has been moved to a memory care facility. Now the estate is finally being completed and it is time to work out a system for the brother who can not manage money, medicine, showers, and home maintenance. I am retiring shortly and money will be tight for me , so I am downsizing.
Should I offer him a place to live in exchange for a lower rent, which would make both of our lives easier. He smells, he does not shower, he does not do laundry, he does not get hair cuts, he does not clean up after himself, he does not leave the house but lies in bed all day watching TV. He also will not be able to afford the place he is in, once I am no longer a safety net. He has lived on the streets before. He has attempted suicide before. He and I always got along well when he was a kid and I was a teenager. There is still that connection between us, but I also have to be prepared for being there for my daughter should she need me. My ex was just diagnosed with cancer so lots of unknowns in the future. Known unknowns.
Should I care for him? Does it help him to have a stable home? Can I care for his needs when he doesn't take on any responsibilities? Is it even remotely realistic to make an agreement in which he pays rent, takes showers, cleans up. He gets really angry when he is challenged.
I am so happy to have found this site. I am a sister of an older disabled brother. He is 58 and I am 53. I have struggled to care for him and have felt so alone in making decisions for him. I will just say that it is such a relief to hear others who have similar challenges; especially with unsupportive and critical family members who have never offered to help! Thank you for your honesty; it validates what I have quietly observed and experienced.
Good for you Willow47 These siblings are our angels. As my 53 year old sister with downs is now in her final stages of life with dimentia, our family is mourning deeply for the loss we are about to endure. I know it isn't easy, certainly not but I wouldn't trade having her in my life or my children's lives for anything in the world. Her unconditional love and sweet Spirit has been an inspiration to anyone she has touched. Granted, she hasn't been coddled or been given free reign because of her disability. She has been treated like the rest of us, holding her accountable along the way for behavior, etc. luckily, my parents are still alive and have been taking care of her but all of her 3 siblings would love to take her in if anything were to happen to my parents. I don't want to offend anybody in this thread but I am shocked and hurt by what I perceive as insensitivity to Your disabled siblings. I am coming from a totally different place.
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