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I am on the autism spectrum and pretty much live with my 70+ year old parents. I am the only child. My mother's been out of rehab for two weeks, she was diagnosed with mixed dementia and renal failure. No prospect of a nursing facility because she has no money and it could take up to a year for Medicaid to process... with no promise she'll even be accepted... I can't keep doing this. I wanted her to just pass on or be placed in long term care... but neither my father or myself can pay the money for long term and we been forced into trying to save her despite being an absolute misery and burden. She was very well behaved at the facility and we were led to believe she would continue to be fine... but no. She is a heavy smoker, been diagnosed with mixed dementia and we have to fight with her every other day to go to dialysis now. Not to mention situate time for the homehealth and social workers. It takes me over an hour every morning for her to take her meds and feed her and then I have to literally run to the store for more food. She'll eat through a weeks worth of groceries in two days and I can't cook as she's always smoking in the kitchen. Refuses to budge.


My father works two parttime jobs and I work near fulltime hours. I used to freelance but whenever I'm home she follows me everywhere. when im in my room on the computer she is there and WATCHES ME or she lies down on my bed and starts crying wanting me to hold her hand. So I can't draw. Our finances and resources are at a breaking point. It takes both of us to get her to dialysis. Two days ago she was fighting and screaming profanities, made attempts at destroying the inside of my father car and followed him around in the parking lot in the hot sun yet refused to go inside the clinic. They made me sit with her. I keep losing time at work and now I worry i might lose it completely. which sucks because it was so hard to get someone to hire me in the first place. I was with this company 10 years and I was recently told they'd consider making me fulltime...course that probably went out the window now after all the callouts. Also I think I cheesed off the boss when I tried asking another manager if I had to do anything special to get fulltime :(


The homecare people and socialworker keep calling. Social worker called adult protective services because my mother would go after me every time I was on the phone but...what would that do if anything? Had child protective services show up when I was little but then the lady left and nothing came of it. Social worker made the appointment to get her physiologically evaluated in September since she got other mental issues that have long been unchecked. But the day clashes with her dialysis times and if we adjust THOSE it screws up our work hours. We'll have to switch her dialysis and lose three days or pray we can get her sister to somehow help but she is loud and confusing. and even after all that we may not even get her in the building.


My father has a weak heart I really dont want to lose him from all this stress. my family is so angry all the time and hes the only one who never screamed or yelled at me, I dont want to lose him. I almost lost him already due to sepsis two months ago. She'd slam and bang her fists on the table because she is out of smokes and wont go to bed. She doesn't sleep I wont be able to get her up tomorrow for her meds at 8am. Also dialysis at 11 . i feel like dieing.


My mother was horrid, shortsighted and selfish her whole life why are we being forced to do all this for her now? The dementia and kidney failure has made everything unbearable has anyone else been in this position? Reading peoples experiences here aren't comforting. That these are the "best days" and to enjoy them because its going to get worse?? That many caregivers are likely to bite it before those they are caring for?? that she'll eventually forget to use the toilet? That I'll have to start hiding the knifes? That I'm forced to care for them under filial law? I asked the people at the clinic what her life expectancy was but none of them wanted to give a honest answer. I may have to endure this anywhere between 1 and 30 years apparently. I have not slept well or eaten. I am so drained from talking on the phone, fearful everyday she'll go after me again. It feels like my skull is fire and I am hoarse from crying. shes always yelling at me and calling me a mental case who needs to be taken away and yet shes putting her cigarettes in her coffee and drinking it moments later. Have I mentioned she still won't shower or change her clothing? How do people deal with a situation like this? I've been told to back off...told to leave. Yet in the same breath say I am not allowed to stop care even though she clearly doesn't want it. They will fall apart and I'd be the one to blame. My dad sure wont be able to get her into the clinic and he'll probably be put at fault if she dies from lack of care. He doesn't deserve this!


i want to die

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Your Mom needs to be evaluated for Medications. Some will help with the nastiness and other things you describe. When asked to sit with Mom, tell the nurse that you must get to work or u may lose the job. Maybe there is something she can be given before she goes to sedate her a little.

Who told u Medicaid will take a year. Mom received hers 2-3 months after I applied. She could have been evaluated when she was in rehab and a Medicaid application started then. Easiest way to get them in. Your Dad needs to talk to Medicaid to see what his options are. Your Mom needs more care than u can give and it will only get worse.
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Reply to JoAnn29
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Hi, Wow I really feel for you. I truly could not, mentally nor physically, handle walking on eggshells waiting for her to blow again.

It sounds like she's in a constant state of extreme nastiness. Her rude, selfish, demanding, tantrum threatening attitude, must have you guys living in varying degrees of panic at all times. I could NOT live in a constant state of anxiety, even mildly, as a default mode. NO WAY!

My Dad was a paranoid schizophrenic, who drank, too boot. Although I don't have memories of him drunk, I am saddle with the trauma of him blowing up . And you know what would set him off? No? We don't know either. He'd be sitting quietly, then BOOM!! Chairs went flying, fist through the walls, windows blown out, anything that wasn't tied down flew.

I remember thinking, this is what Dorothy's house looked like , from the inside, during the tornado.

The reason for my walk down the yellow brick road is to say, get out.
I know families buckle down and band together during a crisis.

But Sweetheart, this isn't something your mother is going THROUGH,
this is who your mother IS.

She is not your problem to fix, not your responsibility to see that she gets dialysis, and she is not your hell to endure.

Your father chose to marry her, he also choose to stay with her. So it's by choice he should endure her. You did NOT CHOOSE to marry her. You did NOT CHOOSE to be born to them. But you ARE CHOOSING to live in a place that makes you want to die!

Do you really think just because you were born there, it then becomes your responsibility to fix things? Things that were broken long before you were born? How does that even make sense? Think about that. Our responsibilities are lateral and down. Ourselves and our kids. And even the kids aren't our responsibility forever.

You want to WANT to live? You want to pursue a career? Fall in Love? Etc.... Well that's all up to you....if you CHOOSE to make it happen, then that is all your RESPONSIBILITY. No one else' life, their life choices nor outcomes.

Just you and your life. Get out ASAP, you've got some living to do.💜👍
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Reply to Pepsee
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Totally agree with Ahmijoy, call 911 the next time your mom becomes violent and out of control. Tell them you fear for you and your dad’s safety. Once she’s out of the home you really do have the power to refuse her coming back, you may be pressured to have her home again but if you and dad stand firm she will get care in a better setting for her and you both. Please keep us posted, no one should want to die to escape their living situation, it can get better
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Reply to Daughterof1930
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The next time your mom “loses it” and starts screaming/crying or going after you or your dad, call 911. Tell them you are afraid for your safety and your dad’s and you are even afraid your mother will hurt herself. They will most likely “Baker Act” her which means they will transfer her to a psychiatric facility for evaluation. DO NOT BRING HER BACK HOME. Be very firm that she cannot be cared for at home. From what you’ve written, Mom has some serious mental issues. While she was in the hospital/rehab, she must have fallen through the cracks, so to speak. Even elders with mental issues or dementia cannot “showtime” or put on an act of normalcy 24/7. At some point she must have lost it in the facility but it was overlooked.

The next time she loses it, video her on your phone; even more than one episode. Save it and show it to anyone who evaluates your mother. Anyone who tells you that your mom is cleared to live at home should probably be evaluated themselves because she’s not. These people can help you file for Medicaid and tell you what to do while you wait.

You need to get on the telephone and make some noise. Call Adult Protective Services and have them come out. Use your videos of her acting out because she will “showtime” them as well. You can also call your local area Agency on Aging although people who are mentally unbalanced usually aren’t their forte. You could even call your largest local hospital and ask if they have mental health professionals you could speak with for help.

Mom and her behavior are affecting your father’s health and your life and future. While we can offer advice and an listening ear, ultimately, you are the one who needs to act. It’s your reality and we can do nothing but cyber-support you, which we are happy to do. Keep us updated. Good wishes.
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Reply to Ahmijoy
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Hasen, I am so sorry for all your and your father are going through. She needs to be in a facility that can care for her. Have you actually spoken to Medicaid? Many people are placed “ Medicaid pending” while their application goes through. Why was she in rehab? The easiest time to get placed is when a person is hospitalized, or rehab, and then they cannot be cared for at home by the family. It may take another event like that to start the process. Your posting will get lots more input soon with more advice.
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Reply to rocketjcat
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