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I am 27 & i knew since i was a teenager that i would have to care for my mother. She is 54 & healthy but she has an intellectual disability & has never lived on her own. My grandma has always taken care of her but she is getting old & will not be able to care for her much longer. My grandmother & aunt insisted i take my mother in (even though my aunt is more financially capable of taking her in but she doesnt want to because she has a husband that wouldnt want to take on that responsibility). I am still at an early stage of my life & i feel like it would affect me & any relationship i have in the future. This wasnt something that happened unexpectedly or occurred because of old age this has been in my thoughts for years because i knew i would have to be responsible for her when the time came. I feel like i had this obligation put on me since i was born. Im not sure what to do & i feel like i would be giving up a large part of my life taking care of her. Am i wrong to not wanting to care for her for the next 25+ years of my life?

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At 98 I feel the stairs are too much of a challenge for almost anyone, with or without laundry. The knees are too wobbly and the balance too poor, and holding on the the railings only means a shoulder wrenched right out of it's socket.

98, to my mind, is time for someone else to be doing that laundry. Just my humble opinion at 81, knowing what stairs and laundry now mean to me, and unable to imagine doing the, even half a decade more at this point. I don't know, maybe this stuff levels out a bit, but I saw more changes for my body between 70 and 80 than at any other time.
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lealonnie1 Apr 24, 2024
Who's 98???
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You are not wrong to want your Own life and can Only Love your Mom but are Not Obligated to take care of her . Your Aunt and Grandmother should Not enforce this on you . There are group Homes and HUD Housing for disabled people . If you have to go to your / her Local housing authority and ask " What group Homes are Available for persons with Disabilities . " Usually the group Homes fall Under the category of Nursing Homes. You are Just beginning your Life at 27 and Looking for a relationship, career and a life of your own . You were not Put On Earth to be a sacrificial lamb or martyr . Get a therapist to talk to about Having Boundaries and saying " No " Just because you were born to this woman Does not mean you owe her your life .
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My sister died in 1996 leaving a 6yr old behind. My brother raised him and at 18 he was sent up here to be with Mom. She was 80 at the time and I did everything to get get him his Moms pension and SS disability. He gets help from the State for his rent, a coordinator and Friday a CBS worker to come in and take him to appts, shopping, clean up his house, and help with paperwork. I have been able to step back. I primarily are just his POA. He has a Neurological problem that he may have Dementia sooner than later. When that happens, I will allow the State to take over his care because I am almost 75. My daughter is second POA, and I will be telling her to do the same. I love him, but I am tired of worrying about him. It causes me anxiety. I would do this if it was my own child.
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You are not wrong in thinking this

any "agreements" you may have been talked into as a teen do not have to stick now that you are an adult. You can make your own decision as an adult about how much you will do
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Just because your aunt and grandmother insist you do this, it does not mean you have to. That is the beauty of being an adult....you get to decide what you do and don't do, not the family elders. Remind them of that fact.
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I want to add to all the good suggestions here that your mom should be placed in some kind of supported housing environment right now, e.g., group home, while your grandmother is still alive and can be a support and comfort to her in the transition. Too many people have kept an intellectually challenged child at home until they themselves become too infirm to manage their care. It's terribly hard for both the elderly parent and for the adult child who is suddenly thrust into an "alien" environment. Has your mom every gotten any services for adults with intellectual disabilities? If she hasn't, it's not too late to start getting this set up now. You should not be "IT" in this situation, for absolute sure
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Is your grandmother her legal guardian? Is anyone? Whoever is her legal guardian should start talking to a social worker for her county. If she doesn't have any legal representative, then the social worker would need to know this. A judge can assign her a legal guardian who will meet all her needs going forward. Start the process now as it may take a while.
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I agree with what everyone said 💯
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Caregiving effects all aspects of your life: physical, mental, emotional, spiritual, and financial (often overlooked but true). I am sure your grandmother is worried as she ages that she will still be capable of caring for your mother, but she needs to go to an office of aging to let them help her. I assume your mother is on disability payments. There are places that house and help her if she is disabled. Do you think she could have a part-time job if she had a helper? It can take a few years to get into these programs so I would seek elder care or council on aging to help see what would be the best fit for her.
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I hate to be the bearer of bad news, BUT.... your mother only being 54 years old, could live well into her 90's which would make you caring for her another 50+ years, not 25+ years.
It sounds like perhaps your grandmother has somewhat enabled your mother not allowing her to live on her own or in a group home of some sort to give her more independence.
You don't really explain what kind of "intellectual disability" your mother has, but allow me to say this as plainly as I can.
YOU ARE NOT RESPONSIBLE FOR YOUR MOTHER!!! Period. End of sentence.
When your grandmother decides that she can no longer care for/enable your mother than it will be up to her to make arrangements to have her placed in the appropriate facility where you will just get to be her daughter and advocate(if you choose to).
And you can live and enjoy your life any way you see fit.
And hopefully it will be like Alva always says and I have to agree, at least 1000 miles away from your mother.
It's time to find your voice and let your mother and grandmother that you WILL NOT be taking care of your mother....EVER!
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The job description for Sainthood isn't very good.
The outcome in life for Saints has a history of not working out well for them.
You have a right to your own life.

If your mother is incapable of living on her own then you need to contact Social Workers through her medical team and learn how she can apply for Medicaid (assuming she has, with her disability, nothing other than SSDI to support her) so that she can be placed in a group care home.
There she will have QUALIFIED and trained personnel to care for her. You will be a loving son or daughter visiting.

I often say that the best place for family is about 1,000 miles away. In your case I truly mean this. You should move out of the area in which your family is living and make a new life somewhere. You will otherwise end up for your lifetime an unpaid slave to family.
Others may have "expectations" for you. That isn't important.
You have expectations, but you also have CHOICE.

That is my personal opinion. You are now a grownup. You will make decisions for your own life now. That is your freedom to do, and your right. Whatever choices you make for your own life now I wish you the very best. Remember, you did not cause this and you cannot fix this. You can, however, sacrifice your own life to it if you CHOOSE to. Remember, it is a choice. There is no answer. There is nothing here that will change anything nor make anyone happy. It is simply a tragedy, and I am so very sorry for it.
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There is no way you should be responsible for your mother’s care, it’s simply wrong for anyone to ask or expect this of you. Your mother does require ongoing care and supervision, and the place for that in an adult with intellectual disabilities is a group home or supported living setting. It’s not an institution, thankfully those are now rare, or a nursing home. Your mother can live an active life in a supported setting, with activities, possibly a sheltered employment job, and a social life with others with similar needs. You can visit and be her advocate. Please let all family members know this is the next step, one you’ll assist in finding. Find a chapter of ARC nearest to you, or call the local Council on Aging for a referral to the appropriate services. Do this sooner than later as there may be a waiting list. Don’t bend on this, it’s important for both you and mom have a future that meets each of your needs
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You are not obligated to take her in. No one else wants to do it, so you've been made the scapegoat. This is not okay. And you are not wrong for not wanting to give up the next 25 or more years of your life. Just because they expected you to, does not mean you must oblige. Everyone else will be happy while you are drowning. How is that fair?

People tend to think that if someone is not married or has no kids, that they have all the time/money in the world, and can take on anything family dumps upon them. Or you have nothing else going on in your life that takes up time.

Mom would do better in a group home for intellectually disabled people. I have a relative who lives in a group home and overall is happy there. If she is able to work, there's programs for that too.

You have to stand your ground NOW. Others will try to guilt you with "but it's your mother, you have to do for her!" and "you're being selfish". You're being just as selfish as the aunt who won't take her in because her husband wouldn't like it....and yet she likely doesn't think she's being selfish at all. Maybe you’d like to get married someday too? Why is it okay for the aunt to insist she can’t sacrifice her marriage, but it’s fine for you to sacrifice your future marriage?

Start finding arrangements for mom. Do not move her in. Not even as a last resort.
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Explore options. No, you should not care for Mom for the next 25yrs. Contact your county Disabilities Dept and see what is out there for someone like Mom. There may be a nice group home that she can be placed in now.

There was a family when I was growing up who had a Downs syndrome daughter my age. When she was approaching 60, Dementia set in and she started becoming a problem. Her mother moved both her and the daughter into an AL. It was promised if Mom died before daughter, the AL would continue to care for the daughter. The daughter passed in her 60s, before Mom.

You should not be expected to care for Mom. She probably was more a sister than a mother and you should not be expected to care for her.
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No, you are not wrong at all to want a life of your own. Why did your mother have children if she has an "intellectual disability" that would require caregiving for life???? Can she not go live in a group home type environment where she'd have support? Perhaps you can speak to a social worker about such a possibility for mom. You'd not be "abandoning" her, just living your own life and allowing her some autonomy of her own.

Best of luck to you.
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LoopyLoo Apr 23, 2024
Wondered that too. I am guessing the mother was never supposed to have children (or should not have). Sadly it's so common for women with intellectual disabilities to get pregnant by someone who was taking advantage.
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No, you are not wrong. Caregiving will burn you out very fast and as you pointed out you need to go out and have a life yourself. I am not sure if you plan on going to college or not, if you are caregiving will wear you out. If you have to work a full-time job, I am unsure how someone with more advanced could be cared for. Would it possible to look for a situation where she lives in apartments for people with disabilities? This way there would be someone to help look out for her and that could help take care of basic needs. She might even be able to work a low-key job if she lived in housing for the disabled.
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