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