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My mom is 90 and is her health is failing. My sister is 70. She is deaf, can't speak and has the mentality of a young child. She can be mean. My mom cares for her. She buys food, and her medications. There were no funds put aside for her future care. When mom passes, the house she lives in now will go back to the bank. My sister will have no place to live and no one to take care of her. She cannot live with me. I do not want to be her guardian. She is very difficult. I could not take the stress of living with her. I am married and work fulltime. What will happen to her? Will the state step in and provide a place for her to live with help? Is there anything I can do now to help facilitate that? I do not have money for lawyers. Are there any free organizations that can help? Thank you for your help.

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Carolyn, you say that your sister with disabilities had a daughter who is now in regular contact. I hope that your sister’s daughter did not inherit the disabilities. This is not an unusual situation, as many people with intellectual disabilities have been taken advantage of sexually. It could be good to talk to the daughter about where to go from here – if she can cope with the whole situation, she needs a voice about this.
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Reply to MargaretMcKen
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What are your states laws!

most person declared incompetent of living independently will be a ward of the state and assigned guardian after death of parent if no other family ( blood relations) member chooses to be so in my state.

if you choose not to be guardianship that’s for the best, it doesn’t mean you can’t visit or care for the person.

if your parents isn’t being a good guardian you might what you connect with the courts before death for an outside person to be named. This doesn’t require lawyers in most states, but it will cause family dramatic drama.

you’re not responsible for caring for your sister. Yes they (state) would place her in a home or managed care, butt part your sister will be alone if living in home with mother till the state removes her, even after mother’s death. Placement of sister could take awhile. So the wise thing to do is set up what if’s before mother’s death aka state appointed guardian.

good luck
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Reply to Ohlas1
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Carolyn, is your mother your sister's legal guardian?

If she is not, the sister has the right to say where she wants to live.

If mom IS sister's guardian, I would encourage you to get APS involved because it sounds like sister's medical needs are being neglected (mom doesn't think she needs meds for agitation?) and no planning is being done for her future.
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JoAnn29 Jan 20, 2021
I would think Mom is her guardian. There is so much she would have needed to deal with over the years that she would have needed to show guardianship. Being her mother doesn't mean anything after 18.
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Wow... bless your mom for being able to carry this heavy burden at her age! I don't know what was in the links posted for you, perhaps something helpful! Although APS is often mentioned, one would think this would be a good place to start. You don't have to give your name, but just report elders in need, as both ARE elders! One would hope whoever they send to check on them will figure out this is NOT an ideal situation. If your mother were to pass and no one knew for a day or three, would sister be able to "manage" on her own, prepare food and take care of herself? Is there any way to install a camera or 2 in more commonly used areas, so you can keep tabs on them from afar?

I would agree with the others, there needs to be plans in place for the inevitable. Those plans should not include taking on her care. If the state takes on the guardianship role, you won't have say in where she goes or what care she gets, but you should still be able to visit her (depending on virus status.)

One of my cousins had 2 kids, both with a form of MD. They didn't catch it soon enough in the first one (milder, but still disabling) before she had a second child. J was totally disabled, unable to walk, talk or take care of herself. Turns out my cousin (and her brother) developed symptoms later in life, so she was having trouble raising the kids. Her husband died young and so her mother helped with care as she couldn't do much, then another cousin stepped in when the mother passed. My cousin actually passed a few years ago (her brother passed before her), only a little older than me. Her son went to a group home (the other cousin became guardian) and J also was placed. Sadly the surgeon correcting some issue she had left a sponge in her, she developed infection and died.

Your mother could pass first. Your sister could also pass first. Having a super-senior caring for a seriously disabled senior is not an ideal situation! IF APS is of no help, can you talk with their doctor? Perhaps s/he can get a SW involved? Certainly stick to your guns about not taking them into your home, but if you can facilitate some help for them now, and have plans in place for the future, it will take a burden off of you. A bit of effort now would be better than a scramble after something happens.
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Reply to disgustedtoo
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Yes, your parents should have made plans long ago but I know people of your parents age group that felt it was their responsibility to care for their challenged child for the rest of their or the childrens lives. One woman I know was glad that her child died before her because then she wouldn't worry about what would happen to her. The woman passed not long after the child. J lived to be in her 60s with downs.

I have a physically disabled nephew. Hopefully Mom did get sister Social Security Disability. With that she should have Medicare and Medicaid. If she does not have SSD she may be able to get SSI which is Supplimental income. Medicaid comes with that. County Social Services should be able to help with that.

I then would Contact your County Disability Dept and see if they can help with resources. Make them aware that you do not want to become her guardian. They may know of group homes but u may have to go with a Nursing home. I suspect that sister may have Dementia. It happens in people with an already a damaged brain and then throw deafness into the mix.

Medicaid LTC is available for your sister. She has no assets so it will just be a matter of being able to place her. This is where allowing the State to take over her care is wise. They can place her much quicker than you.

Let the state take over guardianship. Otherwise, you will be responsible for sister for the rest of her/your life. I know a woman that took this responsibility over for a cousin who was is his 50s at the time. The woman is approaching 80 and her and husband are having health problems. She was having a hard time having her guardianship revoked. The state was not allowing it. I myself will eventually have to allow the state to take over nephews care because I am now 71 and nephew 30. My daughters are not in the positions to take on his care. With his neuro problem, he will eventually have Dementia.

You can consult your Office of Aging. See what resources there are out there. But, you may need to do the researching yourself. There r resources out there you just have to know where u look.

Was ur sister ever taught to sign? I know a woman who is deaf and her children have been able to sign to her since they were very young.
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Reply to JoAnn29
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Why would the house go back to the bank -- can't it be sold?

I'll be interested to learn what happens, as I have a cousin in exactly the same situation. She's deaf, about 72, and lives with her 92-year-old mother who is no doubt in declining health. The cousin tries to make a connection with me about every 10 years or so, and I dread having her end up on my doorstep one day. I have no idea how to help her, and I have no intention of taking her on. I've met the woman once -- 30 years ago when she showed up at my wedding uninvited.
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Carolyn5 Jan 17, 2021
My mother has a reverse mortgage on her home. She has taken way more than the property is worth now.
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Here is a useful link to programs for Intellectually Disabled adults in Pennsylvania.

http://pafamiliesinc.org/understanding-systems/intellectual-disabilities/intellectual-disabilities-information-and-resources-for-pennsylvania#:~:text=The%20Arc%20is%20the%20national,related%20disabilities%20and%20their%20families.

Did your sister go to school at all? She grew up at a time when there were few public school programs with your sister's disabilities.

You would do well to look into programs and good medical care for her now. Is she on any neds for her "meanness"?

The best thing I think would be for you to start making plans NOW for her future life, when mom dies.

The transition might be easier for your sister if she has mom's approval and isn't dealing with grieving her death.
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Reply to BarbBrooklyn
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Carolyn5 Jan 17, 2021
Thank you for your response. I will check out the links. My sister did go to school for the deaf. At that time they taught how to read lips. They discouraged sign language as they wanted to stream line her into society. I never learned sign language. She learned some from her friends and boyfriend. She is on no medication. My mom seems to think she doesn't need any. I agree with you in that it would be best to my situated now while mom is still alive to support her with a move but mom will not hear of it. My mother has tremendous guilt and feels like its her responsibility to take care of her. Did you ever hear of the elephant in the room? Well my mom lived her whole life this way. If you don't talk about problems they don't exist. So now I will be left to pick up the pieces of this insanity. Appreciate your time.
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Carolyn, this is a strange question to be asking so late in the lives of your mother and sister. ‘What happens when I die?‘ That’s usually the biggest worry for the parents of children with physical and intellectual disabilities, and would normally have been considered at least 30 years ago. There would be a pension for your sister, perhaps a trust fund holding some of the pension money, day activities organised, community living options already in place. If any of these exist, following up with ‘the system’ they are part of, would be a good way to start.

Have you asked your mother what she has planned? It sounds as though the only plan she has is you taking over. Find out what contacts she has had, even if they were years ago, and see if you can get back in touch with them.

If there seems to be absolutely nothing, the best thing to do might be to contact a disability organisation and talk to the social worker. Perhaps contact APS. But yes, it would be good to start on this now. Your mother might die suddenly at any time, or become unable to live at home or to care for your sister. At that point, all the problems will drop on you!
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Carolyn5 Jan 17, 2021
Hello, Trust me, I have been thinking about this my whole life. I live with this stress every single day. I am the youngest. I have a middle sister who is currently the caregiver for her granddaughter who has CP. I wish my parents would have done the right thing years ago by putting her in some sort of assisted living or group home. At least they could have taken her SS money and put it aside for future care but they did not. They let her have it all. I know my parents did the best they could. They lived paycheck to paycheck. My mother does not discuss these issues. I think she is hoping either I, or my middle sister will take care of her. My sister does have a daughter. she was given up for adoption. She did seek out my sister several years ago. They were seeing each other once a month before Covid hit. Thank you for your feedback. I appreciate it.
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Your sister will require guardianship of the State. They will pay for her care and placement. Once they take charge you will not have much say about placement, but the other option is that YOU take charge, and I highly recommend that you do not. You do not need the help of Lawyers. How your Mom has done this lifelong I cannot imagine, but at the point your Mom cannot do this, then you report a Senior at Risk with the death or the inability of her caretaker to care for her. You just see to it that Adult Protective Services are called, and EMS if you must access ambulance in an emergency. Don't take your sister into your home. That would be a great mistake. This must go through the system, because the system will be very very very much involved in trying to make you the substitute for your Mom.
I am so incredibly sorry for this. What an awful burden for your Mom, for you to witness her exceptional sacrifice for her child, and for you to have to deal with the fact that your Sister will go to care of the State. But quite honestly I cannot see another way round this. If she is placed nearby to you you can provide the support you are able to provide.
Do NOT accept guardianship. DO not accept care even temporarily. If you do things will be 1,000 times more difficult to unwind than they are as it stand, believe it or not. Because as things stand they are so sad, it is hard to imagine worse. Trust me, worse exists. I am so sorry and hope you will update us as things move along. I saw my own Mom pull herself up to care for my Dad at the end of his life, and she as well was 90. In all truth she seemed to thrive, but when it was gone it was a collapse, as can be imagined. I am just so sorry for your circumstances.
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Reply to AlvaDeer
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Carolyn5 Jan 17, 2021
Thank you so much for this information. It has been so helpful. I pray that when the time comes I can be strong enough to do this. I'm not sure how I will live with myself and my decision but I cannot deal with the stress of having my sister live with me. There are so many other factors involved here that I did not mention. She doesn't clean, makes more of a mess than anything if she does clean, she is always breaking something in my moms home like the washing machine, toilet, garbage disposal. She has no respect for others, makes fun of people right to their face, she hoards things, she has been known to steal money, and she will invade your space or sneak around in your house and snoop in you bags or drawers. These are just a few things that I cannot live with. Plenty more. I just feel as if I will be letting my mother down. I also do love my sister and I feel for her. It's not her fault she was born the way she is. I want the best care for her. Thank you again for allowing me to vent and for responding to my post. I really appreciate it.
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I would contact your local Area Agency on Aging and see what is available for both mom and your sister.
The court will appoint a Guardian if there are no family members that want to take this on.
I would start application for Medicaid if that is necessary (and she/they are already not on Medicaid)
I imagine you have already discussed this with your mom. If not you should talk to her and ask if she has plans or ideas what to do
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