49 and can’t live on own - need solutions

[Anonymous]

OP I will try to get the name for you, but my friend has her brother in law in a group home in silver spring that sounds perfect. His is only males but I’m assuming they have a female one. It’s essentially a boarding school dorm set up where there’s a proctor who lives in his own suite and the rest of the men live in studios or one bedrooms in the small building. The rent is expensive but there’s daily cleaning and the proctor checks on them all a few times a day to make sure no stove is on, water is not still running, etc.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:Being a caregiver for your parents is a possibility

OP stated she can’t prepare a simple meal or turn off the stove!

OP did NOT say that. She said sis is a hoarder and no one cleans up after at all.

Thanks for yelling, always helpful. I did make a mistake and OP said she *can* turn off the stove and prepare simple meals. That’s a long way from providing caregiving for two seniors when she is struggling with mental illness herself.

[Anonymous]

Anonymous wrote:OP I will try to get the name for you, but my friend has her brother in law in a group home in silver spring that sounds perfect. His is only males but I’m assuming they have a female one. It’s essentially a boarding school dorm set up where there’s a proctor who lives in his own suite and the rest of the men live in studios or one bedrooms in the small building. The rent is expensive but there’s daily cleaning and the proctor checks on them all a few times a day to make sure no stove is on, water is not still running, etc.

YES! This would be the ideal option. Please do pass that on to me if you get it. I really appreciate it.
-OP

[Anonymous]

Anonymous wrote:If she is mentally competent, you need to include her in the conversation. Ask her what her plan would be if your parents need to go to a nursing home. Force her to think through the steps all together. If need be, ask your parents to initiate the conversation with you all together as part of their steps to make their aging plans. That way your sister doesn’t see it as plans about her, but rather her having to plan around their actions. Helping her see that she will need a home and resources will make her more amenable to the changes that would be needed.

OP here. Yes, that is very sound advice, and you’re right. She doesn’t always live in reality so she would probably come up with some “I’ll just get an apartment” answer, but maybe she would also realize she is very far from that option. Thank you.

[Anonymous]

Anonymous wrote:OP I was the one to post first to say we are going through something similar with my BIL.

One factor I think it would be helpful for people to know (as it is significant with my BIL's situation) is what is her demeanor/behavior when these issues are discussed. Like how did she behave when she had to be moved from her prior home and into your parents' house? Did she calmly accept it when told her previous home was no longer livable due to the hoarding?

Also, what is the dynamic like between her and your parents -- do they get along, is it a reasonably healthy dynamic or are there issues?

In my BILs case, a major obstacle is that it is very hard to have conversations with him about any of this. He rages at people and can be scary. It's especially hard on my MIL who is getting older and he takes advantage of her age to bully her. He also will not listen to my DH. He has an aunt he sometimes listens to but she, for reasons we all understand, prefers not to get involved.

I see people suggesting that you ask your sister what she wants or chiding you for not involving her enough in these decisions, but IME you don't get to this point if the person is capable of having those conversations.

She was shell-shocked when she had to move into my parents’ home because things had gotten so bad. She can be obstinate and argumentative, and she does think she knows everything. She is adamant she is not on the autism spectrum, for example. She so very clearly is. She will lecture about parenting yet doesn’t have her own kids. She obsessively watches doctor shows yet is morbidly obese and makes terrible food choices. She can be obsessive and compulsive about things. She is secretive about relationships. Spends a lot of time online. I could go on and on.

[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.

I'm a psychologist and find this hard to believe. More likely your parents were presented with (less than ideal) options that they rejected but perhaps need to consider again. I would look for either a therapist or "transition to adulthood" specialist who can meet with your family and break it down for your sister: your parents are going to be in a nursing home within a few years and she will need to do all the things in order to live by herself. Along the way, that person can share that if things like working are tough for her there are resources, like disability, supported employment, group homes, that can help, but she has to go through the application process which will include an evaluation. If she refuses, eventually her choices will be things like eviction from their home and living in homeless shelters. Obviously none of this is ideal or easy, but unless you have the desire to bring her into your home, or the resources to fund a never ending string of apartments and personal support workers, it is much better for your sister for you all the face some of the harsh realities of the situation now.

I do live in DC so I don't have any specific professionals to recommend. You might ask on the special needs board. You could also check for resources on NAMI, or maybe Autism Speaks.

[Anonymous]

Anonymous wrote:

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.

I'm a psychologist and find this hard to believe. More likely your parents were presented with (less than ideal) options that they rejected but perhaps need to consider again. I would look for either a therapist or "transition to adulthood" specialist who can meet with your family and break it down for your sister: your parents are going to be in a nursing home within a few years and she will need to do all the things in order to live by herself. Along the way, that person can share that if things like working are tough for her there are resources, like disability, supported employment, group homes, that can help, but she has to go through the application process which will include an evaluation. If she refuses, eventually her choices will be things like eviction from their home and living in homeless shelters. Obviously none of this is ideal or easy, but unless you have the desire to bring her into your home, or the resources to fund a never ending string of apartments and personal support workers, it is much better for your sister for you all the face some of the harsh realities of the situation now.

I do* live in DC so I don't have any specific professionals to recommend. You might ask on the special needs board. You could also check for resources on NAMI, or maybe Autism Speaks.

*don't live in DC

[Anonymous]

Anonymous wrote:

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.

I'm a psychologist and find this hard to believe. More likely your parents were presented with (less than ideal) options that they rejected but perhaps need to consider again. I would look for either a therapist or "transition to adulthood" specialist who can meet with your family and break it down for your sister: your parents are going to be in a nursing home within a few years and she will need to do all the things in order to live by herself. Along the way, that person can share that if things like working are tough for her there are resources, like disability, supported employment, group homes, that can help, but she has to go through the application process which will include an evaluation. If she refuses, eventually her choices will be things like eviction from their home and living in homeless shelters. Obviously none of this is ideal or easy, but unless you have the desire to bring her into your home, or the resources to fund a never ending string of apartments and personal support workers, it is much better for your sister for you all the face some of the harsh realities of the situation now.

I do live in DC so I don't have any specific professionals to recommend. You might ask on the special needs board. You could also check for resources on NAMI, or maybe Autism Speaks.

She seems too old for a transition to adulthood specialist (after reading your message I did some research, seems like these resources are geared toward young adults). Is there a certain type of therapist who would specialize in what you listed above? Thank you.

[Anonymous]

Anonymous wrote:You can’t just put a functioning adult in a group home because they’re messy. You need to talk to her and find out what she wants. You’re really going about it all wrong and if I were her I’d never speak to you again. I’d start by hiring a housekeeper for your parents and have that person help your sister clean and organize her space. From there you might transition to an in law suite with the same housekeeper. If you’re concerned about what happens after they pass then build 2 in law suites. Keep the housekeeper on a regular basis. Establish a trust for the sister and use that money to pay for housekeeper. The 2nd apartment you can utilize to rent out and maybe do rent deduction if that person checks on your sister every day or 2. You need to think least restrictive means not most restrictive seeing a as she clearly has shown she can live alone. For right now see if you can talk her into doing a CNA course so she’s prepared to assist with parental care as parents age. She’s not useless and she’s not broken so stop viewing her that way and you’ll be better off.

I bet you would say that the poor should get brioche ........ talk about clueless

[Anonymous]

Has your sister had testing or any diagnosis? Your sister may be eligible for services, but she needs a diagnosis. Does she currently have health care?

[Anonymous]

Anonymous wrote:

Anonymous wrote:

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.

I'm a psychologist and find this hard to believe. More likely your parents were presented with (less than ideal) options that they rejected but perhaps need to consider again. I would look for either a therapist or "transition to adulthood" specialist who can meet with your family and break it down for your sister: your parents are going to be in a nursing home within a few years and she will need to do all the things in order to live by herself. Along the way, that person can share that if things like working are tough for her there are resources, like disability, supported employment, group homes, that can help, but she has to go through the application process which will include an evaluation. If she refuses, eventually her choices will be things like eviction from their home and living in homeless shelters. Obviously none of this is ideal or easy, but unless you have the desire to bring her into your home, or the resources to fund a never ending string of apartments and personal support workers, it is much better for your sister for you all the face some of the harsh realities of the situation now.

I do live in DC so I don't have any specific professionals to recommend. You might ask on the special needs board. You could also check for resources on NAMI, or maybe Autism Speaks.

She seems too old for a transition to adulthood specialist (after reading your message I did some research, seems like these resources are geared toward young adults). Is there a certain type of therapist who would specialize in what you listed above? Thank you.

Yes, traditionally transition services happen during teen/young adult years, but the specialist my son sees now has had some older clients who came to her when they couldn't live with elderly parents anymore. Slightly different because your sister sort of "launched" but then just couldn't keep going, but a lot of the skills/resources needed are the same.

You could try contacting this organization: https://dccil.org/our-services/
They offer transition services for individuals with "significant disabilities" who are at risk of moving from the community to institutionalization. IDK if your sister is the kind of person they are thinking of--"significant disabilities" may mean intellectual disability or physical impairment-- but maybe they could point you in the right direction if they are not the correct fit.

Also, there is this guy:https://www.nextleveltransition.com/
I know nothing about him except his business popped up when I did a search on the Autism Speaks website, and it sounds like he is serving older individuals, too. (and his bio seems pretty good).

As for the kind of professional you need: you need someone with experience with autistic adults. I believe only a psychologist or psychiatrist can diagnose autism (that's how it is in my state), but that doesn't mean someone without those credentials couldn't be great at doing some family therapy or counseling with your sister first to get the ball rolling (like a social worker, family therapist, etc.). Or maybe even that transition guy, who knows.

I suggest you reach out on other social media platforms for other ideas. I have tons of professional connections in my community, but found our transition person by asking in a local Facebook autism group. Just say you are looking for a psychologist or other professional to meet with your family to provide diagnosis, information, and/or support for your middle aged adult sister who is unable to work or live independently due to undiagnosed autism and/or mental illness.

Good luck. Hopefully you will locate some resources soon. Also, you can post in the Special Needs forum on DCUM. I know it says it's for "kids" with special needs, but sometimes people ask for adult resources there. Folks may know of psychologists who do adult evaluations.

[Anonymous]

Anonymous wrote:

Anonymous wrote:

Anonymous wrote:

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.

I'm a psychologist and find this hard to believe. More likely your parents were presented with (less than ideal) options that they rejected but perhaps need to consider again. I would look for either a therapist or "transition to adulthood" specialist who can meet with your family and break it down for your sister: your parents are going to be in a nursing home within a few years and she will need to do all the things in order to live by herself. Along the way, that person can share that if things like working are tough for her there are resources, like disability, supported employment, group homes, that can help, but she has to go through the application process which will include an evaluation. If she refuses, eventually her choices will be things like eviction from their home and living in homeless shelters. Obviously none of this is ideal or easy, but unless you have the desire to bring her into your home, or the resources to fund a never ending string of apartments and personal support workers, it is much better for your sister for you all the face some of the harsh realities of the situation now.

I do live in DC so I don't have any specific professionals to recommend. You might ask on the special needs board. You could also check for resources on NAMI, or maybe Autism Speaks.

She seems too old for a transition to adulthood specialist (after reading your message I did some research, seems like these resources are geared toward young adults). Is there a certain type of therapist who would specialize in what you listed above? Thank you.

Yes, traditionally transition services happen during teen/young adult years, but the specialist my son sees now has had some older clients who came to her when they couldn't live with elderly parents anymore. Slightly different because your sister sort of "launched" but then just couldn't keep going, but a lot of the skills/resources needed are the same.

You could try contacting this organization: https://dccil.org/our-services/
They offer transition services for individuals with "significant disabilities" who are at risk of moving from the community to institutionalization. IDK if your sister is the kind of person they are thinking of--"significant disabilities" may mean intellectual disability or physical impairment-- but maybe they could point you in the right direction if they are not the correct fit.

Also, there is this guy:https://www.nextleveltransition.com/
I know nothing about him except his business popped up when I did a search on the Autism Speaks website, and it sounds like he is serving older individuals, too. (and his bio seems pretty good).

As for the kind of professional you need: you need someone with experience with autistic adults. I believe only a psychologist or psychiatrist can diagnose autism (that's how it is in my state), but that doesn't mean someone without those credentials couldn't be great at doing some family therapy or counseling with your sister first to get the ball rolling (like a social worker, family therapist, etc.). Or maybe even that transition guy, who knows.

I suggest you reach out on other social media platforms for other ideas. I have tons of professional connections in my community, but found our transition person by asking in a local Facebook autism group. Just say you are looking for a psychologist or other professional to meet with your family to provide diagnosis, information, and/or support for your middle aged adult sister who is unable to work or live independently due to undiagnosed autism and/or mental illness.

Good luck. Hopefully you will locate some resources soon. Also, you can post in the Special Needs forum on DCUM. I know it says it's for "kids" with special needs, but sometimes people ask for adult resources there. Folks may know of psychologists who do adult evaluations.

OP here. You are so kind, thank you for this very detailed response. It is great guidance, and I so appreciate it. I’ll explore all of these options. Thank you so much!

[Anonymous]

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.

[Anonymous]

OP - I would also add your folks might see about setting up a conservatorship for her in the future which is control of her money not if her oerson. A lawyer could say if this is done as part of a trust or not as it seems your sister has little or no regular income.

[Anonymous]

Firstly, regarding a job, there are so many that involve working from home. Surely if she's smart she can do one. Medical transcription? Something else?
Secondly, what does she say when asked "what is your plan when Mom and Dad die and this house gets sold?" Make sure she understands she's not going to get the house. Start there.