49 and can’t live on own - need solutions

[Anonymous]

Anonymous wrote:

Anonymous wrote:If you have money, there are homes/communities for people who can’t live alone. Sorry I don’t know their names, but there is a good one in Florida.

Perhaps a local Trusts and Estates lawyer would know of options (since old people with only one/a disabled child, also face this challenge.) Good luck to you all.

Thank you. Unfortunately, we are limited to the DC area. My parents have asked various professionals (legal, clinical, etc) over the years, and everyone is stumped on a solution.

Have you looked in Rockville? Maybe check out https://mainstreetconnect.org/

[Anonymous]

Your parents and most likely you have enabled your sister to live like this. You write she was "shell-shocked" when she had to move into your parents place as if she were a victim.

Knowing she is a hoarder your parents shouldn't have let her move in. And if they felt like they had to then they needed to have set really rigid conditions such as the room stays clean or no internet, cable, TV, etc.

So you are spending all this time worrying, your parents are worrying, and you know who isn't worrying? Your sister. She is having a feast, goofing around online and binge watching shows.

Co-worker had this issue and when parents died so they bought a house in a a really cheap cost of living area (I think it was Charlestown, WV). Gave sibling a stipend of 1,000 a month (house and cash out of parents estate). Sibling plays video games and eats fast food but is out of sight and out of mind.

[Anonymous]

My sister is a bit older and like this. My parents tried to protect her for years by putting her in her own apartment and supporting her since she can’t hold a job. They turned a blind eye to all that was happening with her being there alone, unable to make appropriate social decisions, provide appropriate self care, have no purpose, etc.

What a mess. When my parents passed away I could not have her living with us — she has other issues because being on the spectrum. She has been moved around in group homes and hates it, but we can’t bring her here because we can’t handle her (she also has bipolar and perhaps schizophrenia). I feel bad but this is the only choice. My parents never wanted to assume guardianship over her, so technically she is in charge of making her own decisions — this was not a smart move on their part. There is no guarantee that she won’t be kicked out of the group home. They do not have to keep here there, and she did get evicted from one for her bipolar outbursts. My parents left money for her in a trust but I cannot put her in her own apartment again as she wants knowing that it was disastrous when they tried that with her before.

It’s a horrible situation and we also went through the period of no one helping. One thing that did help some was her going on SSDI and her waiver support coordinator helped find her the group homes

[Anonymous]

Anonymous wrote:Maybe a college student could move in with her to clean and keep an eye on her? They could get free rent, food, and a stipend. The fact that she doesn't require help with life skills and hygiene actually opens up possibilities for you, since you aren't limited to only being able to hire nursing or medical staff.

What college student would want that?

[Anonymous]

If you're Catholic, I'd contact Catholic Charities. (I'm sure there are similar organizations for other faiths; I'm just not familiar with them. ) In many areas, CC will help anyone anyway and won't do any faith-based litmus test.

It may not be able to solve the problem, but it is usually a good place to get advice regarding your options. Your sister may be more open to discussing her future and what needs to be done with a third party than she is with you and/pr your parents. I have no experience with this issue, but I suspect that the best thing you can do is get your sister a diagnosis. CC may have some ideas on how to do this. For example, it may be willing to send a social worker to your parents'/sister's home to talk with her. It might even be possible to frame this in terms of making arrangements for your parents' future and including her in those discussions. She might be more realistic if she realizes your parents won't be around forever.

Again, I'm not saying CC will wave a magic wand and solve your problem; I'm just saying that often it's a good organization for helping you figure out what programs, if any, are available to your sister and how to get access to them.

[Anonymous]

I would inquire about social services agencies that can help you. What you need is a case manager who can assess her needs and make suggestions so you don't risk upsetting her and setting off dysfunction. Wherever she ends up she will need a case manager checking on her.

When I lived in a studio apartment building as a young adult, the neighbors let me know the woman in the apartment next to me had a case manager and if there were any issues they had her number. The woman had schizophrenia (she gave CM permission to share). I was so glad they let me know. I was kind and respectful to her, but she had some very odd social skills and occasionally uncomfortable boundaries and it helped me to be understanding and not afraid. I never had any issues to report because I knew the issue and so I had already researched online and could set boundaries in a respectful and gentle manner.

[Anonymous]

Anonymous wrote:

Anonymous wrote:Maybe a college student could move in with her to clean and keep an eye on her? They could get free rent, food, and a stipend. The fact that she doesn't require help with life skills and hygiene actually opens up possibilities for you, since you aren't limited to only being able to hire nursing or medical staff.

What college student would want that?

Not to mention that this not a safe situation for either the sister or a college student, given what OP has described.

[Anonymous]

OP here is a resource for help with housing:

https://www.autismhousingnetwork.org

[Anonymous]

Anonymous wrote:

Anonymous wrote:Maybe a college student could move in with her to clean and keep an eye on her? They could get free rent, food, and a stipend. The fact that she doesn't require help with life skills and hygiene actually opens up possibilities for you, since you aren't limited to only being able to hire nursing or medical staff.

What college student would want that?

This. There are plenty of easy, low stress jobs out there for college students. I was a pro at finding them. This is magical thinking.

[Anonymous]

Anonymous wrote:
Op - At this stage you need to focus on your parents to get their financial and legal affairs in order as much as they can for their care and for your sister. Unless she agrees to testing, they will need to do the best they can in planning for her. I would suggest working with an Eldercare lawyer who knows about trusts. They need a will, the family trust, Power of Attorney and Health Care Directives. A financial planner looking at their assets could guide in what they could plan to set aside in trust for your sister along with paying for their longterm care as they age too.

You will need to prioritize what you can do for your parents and your sister, but if she refuses testing, her options will be limited. She has many needs that may be too late to try to meet. Start with your folks and see hoe open thy are to working with you on a plan with and without your sister’s cooperation. You need to put your own family needs first and yourself. These are my thoughts as the parent of a 41 year old daughter who resides with myself and husband. In all honesty even with one who is diagnosed and is involved in the community and connected with services, the future is not one can make a plan for. Group homes or private apartments unless one has a Medicaid Waiver funding slot for full coverage are extremely expensive. You are right to do your research and then set your priorities.
.
Your sister really needs to connect to a life coach who could get her out of the house to do things she would like to do and hopefully include a fitness plan to drop the weight. If she can learn to trust another adult, perhaps she can work on her health issues including mental health. Finding such a person would take time and your parents ability to pay.

Thank you. They have all of the legal documents in place including careful provisions for when they are gone. Thank you for your thoughtful message; a life coach is something we haven’t thought of.

[Anonymous]

Anonymous wrote:OP here is a resource for help with housing:

https://www.autismhousingnetwork.org

This looks very interesting! Thank you for sharing it!

[Anonymous]

Anonymous wrote:I would inquire about social services agencies that can help you. What you need is a case manager who can assess her needs and make suggestions so you don't risk upsetting her and setting off dysfunction. Wherever she ends up she will need a case manager checking on her.

When I lived in a studio apartment building as a young adult, the neighbors let me know the woman in the apartment next to me had a case manager and if there were any issues they had her number. The woman had schizophrenia (she gave CM permission to share). I was so glad they let me know. I was kind and respectful to her, but she had some very odd social skills and occasionally uncomfortable boundaries and it helped me to be understanding and not afraid. I never had any issues to report because I knew the issue and so I had already researched online and could set boundaries in a respectful and gentle manner.

This is a great idea. I will research what government agency would offer this type of case worker. It would certainly be nice to have a third party involved in that capacity. Thank you!

[Anonymous]

Anonymous wrote:If you're Catholic, I'd contact Catholic Charities. (I'm sure there are similar organizations for other faiths; I'm just not familiar with them. ) In many areas, CC will help anyone anyway and won't do any faith-based litmus test.

It may not be able to solve the problem, but it is usually a good place to get advice regarding your options. Your sister may be more open to discussing her future and what needs to be done with a third party than she is with you and/pr your parents. I have no experience with this issue, but I suspect that the best thing you can do is get your sister a diagnosis. CC may have some ideas on how to do this. For example, it may be willing to send a social worker to your parents'/sister's home to talk with her. It might even be possible to frame this in terms of making arrangements for your parents' future and including her in those discussions. She might be more realistic if she realizes your parents won't be around forever.

Again, I'm not saying CC will wave a magic wand and solve your problem; I'm just saying that often it's a good organization for helping you figure out what programs, if any, are available to your sister and how to get access to them.

Thank you. My sister is very religious but not Catholic. As a result, I don’t think this would work, but I do so appreciate the suggestion!

[Anonymous]

Anonymous wrote:My sister is a bit older and like this. My parents tried to protect her for years by putting her in her own apartment and supporting her since she can’t hold a job. They turned a blind eye to all that was happening with her being there alone, unable to make appropriate social decisions, provide appropriate self care, have no purpose, etc.

What a mess. When my parents passed away I could not have her living with us — she has other issues because being on the spectrum. She has been moved around in group homes and hates it, but we can’t bring her here because we can’t handle her (she also has bipolar and perhaps schizophrenia). I feel bad but this is the only choice. My parents never wanted to assume guardianship over her, so technically she is in charge of making her own decisions — this was not a smart move on their part. There is no guarantee that she won’t be kicked out of the group home. They do not have to keep here there, and she did get evicted from one for her bipolar outbursts. My parents left money for her in a trust but I cannot put her in her own apartment again as she wants knowing that it was disastrous when they tried that with her before.

It’s a horrible situation and we also went through the period of no one helping. One thing that did help some was her going on SSDI and her waiver support coordinator helped find her the group homes

This is exactly what we are up against, I fear. She does not have bipolar disorder or schizophrenia, but otherwise this would be exactly our situation, down to the trust and my inability to put her in her own apartment in the future. What is a waiver support coordinator and how can I go about finding one?