How do I start? My brother and I can't leave home until we ensure my mom will be taken care of first. We want to eventually put her in assisted living or a rest home but she's being resistant to the idea because she wants to age in place.
You state mom has dementia. At some point...probably about now...Mom does not get much say in some matters. When it comes to safety that is where I drew the line. With dementia it probably is no longer safe for her to be home alone. the fact that you and your brother have put your lives on "hold" because you are waiting for the bottom to drop out of the bucket says a lot. Next time mom goes to the doctor ask the doctor if mom is safe living alone. Or does she need 24/7 care. When I say "care" I do not necessarily mean "hands on" care it could be help with any number of things. What are you and your brother doing to make it possible for her to remain at home? What would happen to her if both you and your brother were injured at the same time and could not see her for a week, 2 weeks or longer? If she could not manage then she is not as "independent" as she thinks she is.
My mom was also resistant, a fall took the decision out of her hands. Because she made no plan, I did. She fussed, screamed and went crazy... Not my fault. AL medicated her with a low dose of quetiapine. She still wasn't happy but she was calmer. So calm that after a year we have brought her to my home. Still is not happy, but she can always go back to AL. She straightens right up when I mention that.
In creating a contingency plan, the place to start is your local Area Agency on Aging.
You call them up and ask that your mother get "Case Management Services". This will generally get you a Social Worker who will meet with mom (and you as caregiver. With mom's permission) and figure out what services she needs to be able to stay in the home without your help.
Thabks for the additional information, Miku! I appreciate your being forthcoming.
The first step for you is to find a job. You need an employment history. Starting with a fast food place (Taco Bell, McD, Pizza Hut) is great. They are all hiring right now.
WOrting will get you out of the house, expose you to other people and new situations so you can practice social skills. Work on developing relationships right now, not looking for love. Love will find you when you're ready.
In my opinion, you, as a high-functioning adult with autism, find a program that teaches people such as yourself basic life skills that allow you to function in the greater world around you and will teach you the things that you absolutely need to know in order to be independent.
Your mother needs a lot more help than you and your brother can provide. Plus, you both are young people, and should not be spending your youth on caregiving for your mother. Your mother has lived her life and now it's time for you and your brother to help each other and live yours.
So born in 1993? You would have been 27 or so in 2020 when mom had her stroke.
My question is, what did you do after HS until 2020? Even if you didn't finish HS until age 20, that's still a lot of time between 2013 and 2020. Were you working? Going to college or vocational school?
You have Autism and are high functioning, you say.
Have you been to college? Do you have e a regular H.S. diploma?
Have you ever worked for money?
I am worried that what is going on here is less about enmeshement and caregiving and more about your mom trying to protect her daughter from unrealistic expectations and poor judgement about clothing choices and partners.
Most of my former students and children of friends with HFA have gone to college and with support and career counseling are working at jobs from the time they graduate.
What have you been doing since graduating from High School?
I'm concerned that Cathy may not have the proper credentials to help you become independent. How are you living on so little money and do you pay Cathy? If so, from where? Why are you getting social security? What is the disability? I wish you well, but there may be better services to help all of you if you know where to ask for them.
The disability is Autism but me and my brother are high-functioning
Cathy works at a company that helps disabled adults become independant
We have a deal with a church to only pay $700.00 for rent
No, we don't pay Cathy for her services but she teaches us how to clean the house (laundry, dishes, etc) go shopping and learn to budget money to eventually prepare us to leave home
The social security is for the disability and is temporary until I get a job
"Fortunately, we have a lady named Cathy who is helping us learn the skill-sets that will eventually get us to the point of being able to truly break free from our mom!"
Who is "Cathy" and how long has she been working with you and your brother?
"I don't know how to get him to go along with this because he has to obey my mom and doesn't have a burning desire to become independant like me
There is NO way he wants to take over once I actually move out"
If he doesn't have to become independent, then he will have to take over. Don't let his lack of initiative to change things hinder you in your goals. Save yourself.
"My mom no longer works and gets $700.00 every month from Social Security and EBT food stamps"
How did you get the money to buy a new dress? Are you on her credit card, or does she give you and your brother allowances?
How much money per month does she get in food stamps? $700 doesn't seem like much, considering heating and utility bills, maintenance, etc.
Unless you and your brother have some sort of disability, you both should be out in the world working and making your own ways. Your mother's SS and food stamps shouldn't be supporting two able-bodied adults.
You are 33 and your brother is 33. You are both well on your way to continued enmeshment with your mother.
I know this isn't what you want, but is "Cathy" helping you to make a clear plan to escape this enmeshment?
Sara, if you don't work, does your brother? You are 29, correct? How old is he? Are you both living in the home that your mother owns? Where does the household income come from?
You and your brother need to agree on a plan. Is he also planning on moving out at some point? Or is he willing to be the one who becomes your mother's only caregiver?
What is your mother's financial status? Do you have POA/HCPOA? Can you legally make any decisions for her?
You are allowing her to determine how you should live. This is a time when you should be out enjoying yourself, building your financial future, and your own family (if you desire).
The first step in getting a contingency plan is to tell your mother you can no longer care for her. Once she understands you can't do it, you can start to plan what additional care she may need. Set a date when you will stop caring for her and work to that date. If she doesn't want you help to find other help, step away, it is not your issue.
I lack the adequate resources needed to become independant
Fortunately, we have a lady named Cathy who is helping us learn the skill-sets that will eventually get us to the point of being able to truly break free from our mom!
Before I can give her a date to stop being her caregiver I must first have a place to be able to move to and money to be able to buy house
This is what I'm working on and it's why I am applying for a job
If SHE can't handle her own life in order to age in place, then she doesn't get to age in place. I don't know that dementia has to be proven -- if she can't take care of herself and you and your brother don't care to do it, then her options are to hire in-home care or move to a facility.
Reading your profile tells me you have a lot more to deal with regarding your mother than just her care. If you can't hold firm to your intention to move out, then this is all just fantasy. Set a date when YOU'RE moving out, and stick to it. If nothing else, you'll have that physical separation that may force Mom to deal with her life, or at least it'll allow you a place to retreat to when you don't want to be with her.
And for heaven's sake, buy yourself a dress YOU like and ignore your mother's opinions about it.
Hi! I hope you mother has money. If she does, and you're willing to help, try to hire in-home caregivers. You said you have caregivers, but they're unreliable. It took me quite a while (a few bad caregivers) to find good, trustworthy (private) caregivers. Sometimes word of mouth is best (someone recommends you a certain caregiver).
What concerns are extant now? How is her mentation? Her mobility. What concerns do you have about her aging in place. Who is POA? If Mom already has dementia then aging in place is not an option. I have a friend on hospice care who needs someone present now 24/7. She has been so lucky as to find that for 20.00 an hour. That comes to 500.00 a day. That comes to.................well, you get the math.
She is now in a rest home and Cathy is working on moving us out of this house into apartment which will allow us to become independant!
From there I can springboard off of living with my brother to getting a job and eventually finding true love and getting married
At some point...probably about now...Mom does not get much say in some matters. When it comes to safety that is where I drew the line.
With dementia it probably is no longer safe for her to be home alone. the fact that you and your brother have put your lives on "hold" because you are waiting for the bottom to drop out of the bucket says a lot.
Next time mom goes to the doctor ask the doctor if mom is safe living alone. Or does she need 24/7 care. When I say "care" I do not necessarily mean "hands on" care it could be help with any number of things.
What are you and your brother doing to make it possible for her to remain at home? What would happen to her if both you and your brother were injured at the same time and could not see her for a week, 2 weeks or longer? If she could not manage then she is not as "independent" as she thinks she is.
Who pays the bills?
Who shops for food?
Who cooks?
Who does the home repairs?
2. Me and my brother
3. My brother but sometimes I help
4. The pastor Leon and his wife Joyce
Why did your neighbor come over?
Where is Cathy in all of this? What is she doing, since you said she is helping to teach you and your brother to live independently.
Cathy IS helping us slowly become independant
What is your and your brother's plan to support yourselves?
Where will you live?
This is why the "contingency plan" needs to be for YOU, not mom.
My neighbor came over and asked my mom if she wanted to be put into Assisted Living or nursing home and she said "no"
Which means if I don't do something soon to change the situation me and my brother are going to be stuck here taking care of her until she dies!
I can either stay living here as my mom's caretaker OR start working now to become independant and finally break away from this enmeshment!
I want to experience adult things and that can't happen as long as I'm stuck as a caretaker
I will always regret not moving out at 18 but that's because of the disability and not having the resources needed to become independant
Job + save money + move out = Financial independence.
Concentrate on you. On your plan. Eg Setting realistic goals with your Case Manager towards growing your independence.
Mom can age in place in her own home, with adequate home services added as required, probably for a long while yet.
Then, if her needs get too high to remain living in her home, she SELLS her home to fund her new AL home.
This is why you need your OWN contingency plan.
Anything to get me independant as quickly as possible!
I'm tired of waiting and just WANT to see something change soon so I can untether and be free!
You need a job. You need to save money. That allows you to move out and live independently.
Point A is getting a job. Without a job, you have no ability to live independently.
Getting a job is the starting point?
You call them up and ask that your mother get "Case Management Services". This will generally get you a Social Worker who will meet with mom (and you as caregiver. With mom's permission) and figure out what services she needs to be able to stay in the home without your help.
Thabks for the additional information, Miku! I appreciate your being forthcoming.
The first step for you is to find a job. You need an employment history. Starting with a fast food place (Taco Bell, McD, Pizza Hut) is great. They are all hiring right now.
WOrting will get you out of the house, expose you to other people and new situations so you can practice social skills. Work on developing relationships right now, not looking for love. Love will find you when you're ready.
Your mother needs a lot more help than you and your brother can provide. Plus, you both are young people, and should not be spending your youth on caregiving for your mother. Your mother has lived her life and now it's time for you and your brother to help each other and live yours.
So born in 1993? You would have been 27 or so in 2020 when mom had her stroke.
My question is, what did you do after HS until 2020? Even if you didn't finish HS until age 20, that's still a lot of time between 2013 and 2020. Were you working? Going to college or vocational school?
How did mom treat you then?
That thread was created before my birthday
Up until 2020 I have just been living here with my mom and brother
No college or job yet
Mom was more happier before the stroke and also was more lenient on what I was allowed to do
Meaning I believe the stroke is the reason she is treating me like a little kid instead of backing off and allowing me to be independant!
That's why this contingency plan is NECESSARY
Did she need caregiving before that? Why?
You have Autism and are high functioning, you say.
Have you been to college? Do you have e a regular H.S. diploma?
Have you ever worked for money?
I am worried that what is going on here is less about enmeshement and caregiving and more about your mom trying to protect her daughter from unrealistic expectations and poor judgement about clothing choices and partners.
Most of my former students and children of friends with HFA have gone to college and with support and career counseling are working at jobs from the time they graduate.
What have you been doing since graduating from High School?
This is complicating things
I get how she is being protective BUT she is being over-protective and has to allow me to develop as an adult!
I am so sick of her controlling me!
I just want to be free
In order to be able to find my soulmate and marry him without having to get permission from my mom I MUST become fully independant first!
Cathy works at a company that helps disabled adults become independant
We have a deal with a church to only pay $700.00 for rent
No, we don't pay Cathy for her services but she teaches us how to clean the house (laundry, dishes, etc) go shopping and learn to budget money to eventually prepare us to leave home
The social security is for the disability and is temporary until I get a job
Who is "Cathy" and how long has she been working with you and your brother?
"I don't know how to get him to go along with this because he has to obey my mom and doesn't have a burning desire to become independant like me
There is NO way he wants to take over once I actually move out"
If he doesn't have to become independent, then he will have to take over. Don't let his lack of initiative to change things hinder you in your goals. Save yourself.
"My mom no longer works and gets $700.00 every month from Social Security and EBT food stamps"
How did you get the money to buy a new dress? Are you on her credit card, or does she give you and your brother allowances?
How much money per month does she get in food stamps? $700 doesn't seem like much, considering heating and utility bills, maintenance, etc.
Unless you and your brother have some sort of disability, you both should be out in the world working and making your own ways. Your mother's SS and food stamps shouldn't be supporting two able-bodied adults.
You are 33 and your brother is 33. You are both well on your way to continued enmeshment with your mother.
I know this isn't what you want, but is "Cathy" helping you to make a clear plan to escape this enmeshment?
Cathy is a lady who is helping us become self-sufficent and has been working with us for 2 years (since 2020)
I bought the dresses with my own money from Social Security
I need to ask Cathy to help me
She knows I am trying to escape this enmeshment
Now she is trying to control the men I choose to date
Why?
Because she is trying to stop me from getting married so I can stay here forever to take care of her!
I'm so sick of it and the constant arguments between her and my brother
You and your brother need to agree on a plan. Is he also planning on moving out at some point? Or is he willing to be the one who becomes your mother's only caregiver?
What is your mother's financial status? Do you have POA/HCPOA? Can you legally make any decisions for her?
I am now 30 and my brother is 33
Yes we are
Household income comes from Social Security
I don't know how to get him to go along with this because he has to obey my mom and doesn't have a burning desire to become independant like me
There is NO way he wants to take over once I actually move out so I think the answer is no
My mom no longer works and gets $700.00 every month from Social Security and EBT food stamps
No POA
No I can't
The first step in getting a contingency plan is to tell your mother you can no longer care for her. Once she understands you can't do it, you can start to plan what additional care she may need. Set a date when you will stop caring for her and work to that date. If she doesn't want you help to find other help, step away, it is not your issue.
I lack the adequate resources needed to become independant
Fortunately, we have a lady named Cathy who is helping us learn the skill-sets that will eventually get us to the point of being able to truly break free from our mom!
Before I can give her a date to stop being her caregiver I must first have a place to be able to move to and money to be able to buy house
This is what I'm working on and it's why I am applying for a job
Reading your profile tells me you have a lot more to deal with regarding your mother than just her care. If you can't hold firm to your intention to move out, then this is all just fantasy. Set a date when YOU'RE moving out, and stick to it. If nothing else, you'll have that physical separation that may force Mom to deal with her life, or at least it'll allow you a place to retreat to when you don't want to be with her.
And for heaven's sake, buy yourself a dress YOU like and ignore your mother's opinions about it.
Of course I want to move out
It's just I currently lack the resources needed to do so
My mom continues to treat me like a little kid and it's time for her to STOP pushing me and my brother around and accept that we are both adults!
Perhaps I should start there?
If Mom already has dementia then aging in place is not an option. I have a friend on hospice care who needs someone present now 24/7. She has been so lucky as to find that for 20.00 an hour. That comes to 500.00 a day. That comes to.................well, you get the math.