Back in 2008 my dad was in a Nursing Home and passed away from Parkinson's. I learned from a friend of the family that he received poor care in the Nursing Home. They would ignore his call light then when they did go in his room, they would turn off the light then leave. My dad wasn't receiving his proper medication and he was developing bed sores from not being turned like he should have been. He was developing aspiration pneumonia in the evening, but they waited for the day crew to show up the next day to send him to the hospital where he passed away. Nothing was ever done about the Nursing Home and that's why my mom fights going.
The reason I'm still here is because nobody can even talk to my mom about a Nursing Home without getting their head chopped off. I took what I thought was the only choice at the time, I moved in with her. Her doctor even suggested Assisted Living and had someone come to talk to her but my mom wanted no part of it. Back in November, my mom needed 24/7 care and I became her unpaid caregiver. I was then able to get her on Medicaid Waiver since all her resources were used up. My mom is currently approved for 31 hours, the home care agency only has someone available for 2 to 3 hours twice a week. I'm able to get paid for the hours they don't work since it's not possible for me to have a job.
I've been trying to work on an exit plan, but I keep failing. All I hear is the words from Star Trek, "All will be assimilated" "Resistance is futile." I was making my plan to just leave permanently with no place to go, but my plan was blown out of the water. I left my mom's neighbor keep an eye on her while I was out taking care of some stuff, be he dropped the ball and went home when he thought I was taking too long. My mom's agency caregiver showed up and found my mom was left alone for 15 minutes, she called her supervisor who called me to rip my butt. She said, "This is completely inexcusable, irresponsible and won't happen again." She also said she was going to have to make a report to my mom's caseworker to let her know.
I worry constantly about what would happen if I just make an exit. My mom wouldn't take her medication like she should, she wouldn't eat and likely she would just sit in her chair all day. APS would need to arrive within hours and then somehow force her into a Nursing Home or it's likely she will be found on the floor dead.
My mom's caseworker told me I would have to hire somebody to mow the yard this summer because I can't leave my mom inside the house alone while I go outside to do yard work. It's either that or the much more difficult task of finding an in-home caregiver who accepts Medicaid Waiver and has the availability.
So my big question, how am I supposed to do a permanent exit plan when my mom refuses to go to the nursing home and I can't be out of the house for 15 minutes? There is nobody else who is able or willing to take my place, I'm it. I could just wait for my mom's condition to deteriorate to the point where she can no longer say what she wants, but that could be another year or two.
We identified that I'm past the point of burnout with no plan and no place to go. I'm thinking go to an extended stay in another town then hope somebody gives me a job. I won't be able to return to the house until after my mom has passed.
If they threaten you, tell them to jog on and do their jobs, like providing 31 hours of care until they get her placed.
Meds, meals, mobility & hygiene - the big ADLs - can she do them herself? Or needs a little help, or complete help?
You say "it's likely she will be found on the floor dead". I'm just trying to get a picture of why. And why you can't go outside to do yard work for say, one hour? Trying to see what makes her unsafe alone?
Folk say all the time they can manage (when they've lost insight they can't). Is it like that?
It looks as though between them your mother and your mother's caseworker - and as for the nerve of the agency supervisor! - have you feeling so defeated and guilt-stricken that you almost believe there is a law forcing you to be your mother's resident 24/7 caregiver on slave wages. There isn't any such law. You are a free agent.
What is needed is a care plan for your mother that doesn't involve you. You need to work with the caseworker on that. Stop seeing her as your supervisor, and start seeing her as the person who is responsible for developing your mother's care plan and ensuring her wellbeing is provided for.
Pick a date. Say, for illustration, 1st August. On that day, hypothetically, you move 150 miles away to begin your new job and move into your new apartment. The caseworker therefore needs to work *with your mother* on deciding how and where she is going to live without your support, which will no longer exist, any more than it would if you (God forbid) had died or been abducted by the Vogons.
She says she won't consider Assisted Living. Fine. She says the only option is that another person - you - must live with her and be her full-time caregiver? Not fine. She can make decisions for herself, but she can't make decisions for you or for any other individual. The caseworker has to help your mother select from options which exist in reality. You need to get the caseworker to understand that from [date giving reasonable notice] you are not one of the options.
What about this failure to provide the requisite number of Medicaid approved HCA hours? Who's responsible for that?
"The Vogons are a fictional alien race from the planet Vogsphere".
Now I did ask my Father what would happen to those he is caregiver for if he was abducted by aliens... Being a HHGTTG fan, I will use this next time 😁
I just 'disapeared' myself from my sister's care plan. Just as you prescribed. Told Case Manager to replace me, strapped on my walking boots & took a hike. I am living proof it can be done. (I have been replaced by a fleet of others now).
Do you live in a filial responsibility state?
Are you being paid by Medicaid?
You could try calling the police and gave them do a welfare check.
You can call moms caseworker and tell her you want out of this situation. Tell the caseworker you are moving out and not coming back.
*have them do a welfare check
If Mom goes to the hospital this is your chance. Best if she goes to rehab. While there u have her evaluated for 24/7 care. If they say she needs a NH, have her transferred there when rehab it done. In my area rehabs and NHs are in the same building. Its only a matter of changing rooms. You refuse to take her home saying it would be an unsafe discharge. That you no longer will be able to care for her. If u want, allow the state to take over her care.