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We have successfully untethered from her, but how can I be sure she is getting adequate care in her new rest home?


Thanks in advance!

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Just want to explain guardianship of children with disabilities. When under 18, parents are automatically guardians. Once a child is 18 they are considered emancipated. Does not matter how challenged they are, they are emancipated. So, the parents have to file for guardianship. Autism has different levels all the way to Asbergers which these people can usually function pretty well but still have some socialization problems. One thing is being able to read people.

The impression I get, and yes its one sided, this mother has been ill for a while and needed to use her children as her caregivers. She may have never gotten guardianship. May not have even realized she needed to. Children with challenges do not mature if you don't help them mature. Also, children with challenges are usually behind maturity wise in yrs. If no one reported a problem with this family, there would not be a guardian in place.

I keep asking the question if Miku is getting help for her and her brother. No answer. I told her she needed to tell APS she needed help. No answer. This mother had to be pretty bad off for APS to take her from the home. At this point, I hope that APS is helping these two or some government agency.

I have a disabled nephew I oversee and it took a while to set up him up with the help he needed to be independent.
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ventingisback May 4, 2023
I repeat again:

Really, there’s no way a guardian would leave them alone in the house. And there’s no way, even though the Mom was recently placed, they wouldn’t have already organized a guardian. 

There is even such a thing as immediate, emergency guardianship.

Conclusion: OP must be legally competent. She has no NEED for a guardian.

It’s not possible for us on the forum to know the truth about the details. But I bet I’m right: the reality is she doesn’t need a guardian.
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From what I read in your posts, what you like to do is play video games.

This might not be you, but then again, it might be you: I know people who are fully capable of getting a job, since they’re fully capable of concentrating for hours on video games, but they don’t want to work. They want to play video games.
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I agree, BurntCaregiver.

I’ll add my views:

It’s totally possible OP was helping out. But she wasn’t a…“caregiver”…She herself needs a caregiver.

Moreover, really (??), OP was a caregiver to her Mom, and didn’t know until after Mom was placed, that Mom’s been diagnosed with dementia? Then OP wasn’t doing a good job being a caregiver; OP wasn’t even aware why her Mom was able to be forced into a resting home (it’s because she has dementia).

The story doesn’t make sense.

It’s possible OP can’t function on her own. But I repeat, if she’s truly incapable, someone would be her guardian, but she has no guardian. AND…if she has a guardian, the guardian would never irresponsibly let her and her brother live alone in Mom’s house.

Really (??) OP, people placed your Mom, responsibly taking care of her, but completely irresponsibly left you and your brother in the house alone, now ALREADY for days and days? Not possible.

It must be that you’re legally competent. A legally capable adult. It’s possible to have a disability and still be a legally capable adult. I say legally, because it’s a question of law: either you’re legally capable or not. If you’re legally capable, you’re responsible for what you do, including doing all you can to get a job, and not taking advantage of living in your Mom’s house.
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patpaul May 2, 2023
My wife wanted me to post/I tried but I haven't read the whole story like she did so I deleted my post. Better for me to not jump in without a firm handle on facts. That never works out well. God bless all of you on this forum for trying to help.
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The fact that you're not mentioning that anyone has guardianship over you and your brother is also weird. I continue to believe you're taking advantage of your Mom, living in her house.

If no one has guardianship over you, you're actually a capable adult!...A capable adult, taking advantage of your Mom.

AND....!
The people who placed your Mom in the resting home, would not have left you and your brother without simultaneously, taking care of guardianship over you two, not just taking care of your Mom's future.

My guess is you're - actually - a capable adult.
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BurntCaregiver May 2, 2023
@venting

This person is not a capable adult. My guess is there is probably some type of state conservator appointed who administers whatever money they get (SSI, or inheritance, whatever) to pay their expenses and housing then allows them a portion to spend themselves.
It will not allow Mikurotoro and her autistic brother to remain in the mother's house while she lives in nursing home because the property is real estate and an asset that can be liquidated into cash for her care.
Their social workers and conservators will find them housing.
I don't doubt that the mother is very ill and she probably had a lot on her plate providing and caring for with both of her special needs kids. The state will do it now.
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As someone else said, your story doesn't make sense. We will never know the truth of all the details. But here's my guess: you say you found out your Mom got dementia, after she was placed in a resting home. I don't believe it. As someone else said, you would have been told before. I know you have mild autism. But I think you're taking advantage of your Mom, living in her house. You got your Mom out of her house: even though it might not have been only your decision, you helped that happen. And now you're taking advantage of living in her house.
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Mikurotoro92 May 2, 2023
It is so hard to explain all of this but please know that I am NOT lying about any of it

The dementia diagnosis came before going to the rest home and that is what CAUSED her to go to a rest home in the first place
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You are "untethered" now from your "controlling mother who has dementia for SURE" and is living in a "rest home" and you're worried about her getting "propper care" there. Yet post, "Just to tick her off I will wear an off-the-shoulder or a strapless dress. She can no longer control me!" Is your mom not already stressed out enough in a new environment away from her home, do you think?

Your goals and intentions seem conflicted to me. Who's interests do you truly have at heart here?

If mom's, then obviously you go visit her frequently and act as her loving daughter and healthcare advocate, leaving revealing clothing at home along with the chip on your shoulder.

If it's your own best interests you're serving here, why are you asking this question? Perhaps you are feeling conflicted yourself and could use guidance, I don't know.

I will have to stand with BurntCGs response in hoping the court appoints a good social worker to be your conservator/guardian.

In an effort to get "untethered" from mom, it sounds like you've left yourself and your brother in an unmanageable position, alone to fend for yourselves now.

Being able to wear revealing clothing does not make you an adult, I'm sorry to say. There's so much more involved with the job, it's absurd! What's your plan to find out about real life moving forward?

I wish you Godspeed and good luck, and to your dear mom for all she's going through which I'm not sure you realize.
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lealonnie1 Apr 30, 2023
I realize disabilities exist for many among us, and would also imagine/hope social services would intervene as needed to help. As I said to this op, I wish her and her brother Godspeed and good luck with all they're facing, as WELL as their mom.
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II would hate to knock nursing homes because some are really good with their patients but I recommend family caregiver especially for my grandma cuz I'm a Grandma's girl and I don't play about my girl
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Just found out she has Dementia for SURE
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bundleofjoy Apr 28, 2023
the whole situation is a little strange.
if your mother was forced into a nursing home, you would have been told way before today already, that she was diagnosed with dementia. if she herself decided to go to a nursing home, you still would have been told before today of this diagnosis.

you are 29. your mother is around 60? dementia is unlikely.

as far as i understand, she is private-pay (not medicaid) in a nursing home. you're living in her home. it's up to her, if she still wants you and your brother living there. as someone else pointed out, it might not be possible for you two to live safely alone in her house.
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The best way to ensure proper care is to visit. Yes, we all know that you wanted to "untether" yourself, but if you are concerned about her status then check in. Pretty simple. When you are done with your visit, you leave. You can also call the nursing desk or the social worker and keep tabs on her status that way.
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Congratulations, you are now one step further along to improving your life. Unless you and your brother are her guardians, then the responsibility of making sure she gets adequate care is not yours.

Are you still working with Cathy to continue to improve your life? What happens with the house? Do you still live there?

How are the job applications coming along?
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BurntCaregiver Apr 27, 2023
They are not the mother's guardians, CTTN. You've seen this person's posts. Can you believe for a second that the law would allow such a person to be anyone's guardian? Even their own.
More likely mother was the legal guardian for her two adult children. Not the other way around.
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:)

i’m re-posting what i wrote:

if i understood correctly, you're living in her home, while she's now in a nursing home. it doesn't sound fair that you're in her home -- unless she really doesn't mind. my guess is she's not happy about this situation.

——
to be clear, i’m talking about:
mom’s happiness about you living in her home.
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JoAnn29 Apr 27, 2023
These people live in their mothers house because the have challenges. Seems, she did not allow them to grow up. They now need an agency to help them learn to be independent. They have a right to live in their Moms home since she seems to over protected them.
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In addition to the good advice from other..... Just understand that even the best care is never going to be perfect or meet 100% of her needs or your expectations. There were many little things that drove me crazy about the care my mother received and a few that still have the power to hurt my heart years after her passing, but rationally I know that much of it was just because of her decline and there really was no better option.
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I am glad that Mom is getting the help she needs. I worry about you and your brother. I have a nephew who is on the Autistic spectrum and he needed a lot of help getting what he needed to live on his own. I so hope that APS or some organization is helping you and brother. Please be aware, that you will need to mature. I feel my nephew has done a lot of growing up since he has been on his own. You will need some guidance to help you maneuver around some of the legal stuff.

I think Zippy is wrong. You don't want to upset Mom so when u visit wear the appropriate clothes. When on ur own u can do what you want.

I agree that you visit Mom at different times of the day. You just observe if she is clean and seems to be well cared for. Don't expect her care to be like u would do. If she gets nasty, its ok to say goodbye. You can set boundries.

I so hope u guys have someone to talk to. Good Luck.
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I remember you, Mikurotoro and your posts. You do know that the $500 a week you were collecting to be mom's caregiver stops now that she's placed right? You don't get to live for free anymore.
Are you still living in her house and does she still provide for you?
That stops too if she stays in managed care.
A while back you were planning on getting a job at Taco Bell. How's that working out for you? You do know no one can live on minimum wage in the United States.
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PeggySue2020 Apr 27, 2023
Whoa Burnt.
Medicaid is not going to evict her before her mother dies.
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Hi Sara! That you for your update. I was rereading your original post from November:
https://www.agingcare.com/questions/creating-a-contingency-plan-for-my-mom-where-do-i-start-478238.htm?orderby=recent&page=1�

So glad you and your brother will be able to get your lives started as your mom is being taken care of at the facility.
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if i understood correctly, you're living in her home, while she's now in a nursing home. it doesn't sound fair that you're in her home -- unless she really doesn't mind. my guess is she's not happy about this situation.
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CaringinVA Apr 27, 2023
From what she posted in months past, she and her brother are autistic and have been her sole caregivers for a bit. She has been wanting to get out and start her life for a while now. Just giving context of why they are in the home and the mom is not. Her care needs have become too much for them to meet by themselves.
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Just to tick her off I will wear an off-the-shoulder or a strapless dress

She can no longer control me!
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BurntCaregiver Apr 27, 2023
@Mikurotoro92

Your behavior is disgusting and you should be ashamed of yourself.
Have you taken any responsibility for yourself yet or is mommy still paying all the bills and supporting you?
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Make surprise, unannounced visits. If she knows you're coming or is talking to you over the phone she'll likely put on a show to try and make you feel guilty. Keep these visits infrequent, and brief. Especially at first so she can acclimate to her new reality. Do not remove her from a facility without another one lined up under any circumstances. The era of her life dominating and controlling you is now over, unless you consciously allow it to resume.

Just for the hell of it, wear the skimpiest halter top and the shortest shorts possible when you make these visits. Show don't tell that you're in control of your life.
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AnnReid May 2, 2023
And make those plentiful drop in visits BRIEF.
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