I feel like my mom is wasting funds she is receiving for Medicaid Waiver and other programs she is on. She no longer wants to wear her Medic Alert paid by Medicaid, she says it's uncomfortable and refuses to wear it. If I do get her to wear it, she will take it off and leave it someplace and then I'll have to find it. She doesn't like her home delivered meals and throws them in the garbage. I've had trouble getting her to accept a caregiver, the agency finally sent one she likes but this caregiver is coming twice a week and my mom doesn't like that. She has been refusing to take a bath for the caregiver and then she complains the caregiver doesn't do anything while she is here. I really wanted the agency to help with mom's bath, but if she refuses to take a bath, then it feels like a waste.
My mom now says she doesn't want a vertical lift put on the front porch and she said she won't use it. Medicaid Waiver is spending $10,000 on the front entrance to make the house more accessible and my mom says she won't use it.
Like an idiot, I moved into my mom's house to be able to better keep an eye on here and now I'm stuck being her primary caregiver whether I want to be or not. In order to get out from under this I would need to move out with no job and no place to go. I don't know what's going to happen if she falls on the steps because I couldn't make her use the lift.
I tried to have her evaluated but the social worker from the local nursing home said while she clearly needs placement she is refusing to go. She said my mom's mind appears good enough that she does have the right to refuse care even if refusing care appears to be a bad decision. My mom said she would rather die at home than live in a nursing home. She said if my mom is ever admitted to the hospital I could try to refuse to take her home, but it's her house and she does have the right to return to it and if I'm still living here, they might see me as someone who could take care of her.
If her condition becomes worse, such as she can't get out of bed, then I could say that I can no longer care for her because her care is beyond my ability. The social worker did say that my mom requires too much care for the Assisted Living but she has the right to refuse to leave her house to go to the nursing home.
I'm wondering if I tried to cancel my mom's waiver program for her if that would have any effect. They haven't started the front porch project yet and I don't know when they will, all I know is the job was assigned to a contractor and the vertical lift was ordered. I was hoping to get my mom into a nursing home before they started but now it doesn't look like that will happen.
I also don't understand why you continue to allow this care company to keep you in this role of indentured servitude, with them telling you that you aren't allowed out of the house for ANY reason whatsoever. Either mom is competent or she's not. If she's competent enough to insist that she will remain in her home, and she is being allowed to do so, then it should be no problem for you to leave the house. If she is so incompetent that she needs 24/7 care, then she needs to go into a facility, since you clearly cannot get enough support to keep her in her home with 24/7 care, and you are unable to provide that care yourself (which doesn't make you a bad person).
I think this agency is playing you for a fool. Right now, they are probably inundated with requests for in-home care, because of the pandemic...but eventually, that's going to end as things begin to reopen and my feeling is they're trying their best to hold onto clients like your mom; because when the self-pay patient pool dries up, they will have other clients in the periphery who have ALREADY been approved for 31 hours of care. But the only way that works is if they can keep an unpaid someone - YOU - in the picture to keep mom at home until it's more convenient for THEM. So the vague (and not so vague) threats I think are more to keep you in line for THEIR sakes and not mom's.
I said it before and I'll say it again. Take that job you were offered, and then tell - don't ask - the agency and whomever else has a hand in these decisions that THEY need to come up with a plan for mom's care, because it's time for YOU to get back to work.
If found there is no Dementia, can Mom be on her own with the help of the Medicaid waver? If so, you may just have to move out and get a place of your own and a job. Just checking in. If she has Dementia, then u place her and allow Medicaid to foot the bill.
Because...I don't think you have it to be a Caregiver. I wasn't.
Geaton is spot on when she says you're "it" because you're there on the scene. I strongly second her opinion to get yourself a job and get out. I think you need to start exploring government assistance for YOU and try to find some sort of subsidized housing for yourself, then get yourself a job and start taking care of YOU.
Mom's choices are mom's choices, and it's always, always heartbreaking when people opt for the wrong ones; however that doesn't obligate you to follow her down that rabbit hole. Find a place to live, then lay it on mom AND that stupid agency that has you careening between pillar and post: "I am moving out such-and-such date. What's YOUR plan to keep yourself/my mom in the current living situation, since she is hell-bent on NOT going into a facility". Don't ask them for permission - you will never get it. Because it's easier for EVERYONE ELSE if you stay in this sort of limbo, they are not going to be inclined to offer solutions until their backs are against the proverbial wall. And that's a shame, but it is in no way your responsibility. I'm sure you've been asked this before, but I will reiterate - what would the plan be if you were to become incapacitated and couldn't function in this role anymore?
First things first - new home, new job, on your own. I would be willing to bet if you stick to your guns, they will "miraculously" find a solution that doesn't revolve around your giving up your entire life.
I really hope you'll take the next steps to get your life back...good luck!
If you are not her PoA (and no one is), no one can force you into being their caregiver, especially the government. You are "it" simply because you live there so the solution is to get a job and manage her less until you can afford to move out.
Are you being paid in any way for your caregiving? If not, you should be since you don't say you have another way of supporting yourself. You can talk to a social worker about under what conditions she can become a ward of the county, as this appears to be where it's going anyway (if you're not her PoA). You being there may be delaying this. The county will assume control and management over all her affairs until she passes but she will be cared for and protected. You have options, they're just not good or easy ones. But do let us know if you are her PoA because all answers will depend on this.
My mom's case worker with the Agency on Aging approved her for 31 hours per week. Currently the Home Care agency is sending someone 2 times per week for 2 to 3 hours per day. I'm allowed to bill the Medicaid Waiver program for the hours the Home Care Agency doesn't use.
I think it's a bunch of crap because my mom's case worker said she evaluated my mom as no being able to be left alone so because I live with her, they made me her unpaid caregiver 24/7 and the 31 hours are supposed to be respite for me, but since my mom lives in a small town the Home Care Agency is only able to cover a few of those hours.
I'd be happy but I would like the Agency to cover 8 to 10 hours per day 2 days a week, but they don't have anyone to do that. I wanted somebody to come on Thursday, but they didn't have anyone available on Thursday so I had to accept them on Saturday when they were available. I already had my butt ripped because my neighbor was supposed to be watching my mom but he left and the agency caregiver found my mom had been alone for 15 minutes before she arrived. My mom's case worker called the other day and she was inside the house alone while I was mowing the yard. I was plainly told "This will not happen again". She said when I signed my mom up for the waiver program, I was informed that an agency may not be available to cover my mom's hours and I agreed to the terms. So I have to watch my mom 168 hours per week but only maybe get paid for 20 of those hours.
Here's the problem with me taking a job, the employer wants me to start Monday, but the Home Care Agency doesn't have anyone available on Monday so my mom gets left alone all day. I get Tuesday off and the Home Care Agency wants to send someone on Tuesday anyhow because that's the day they can cover. They want me to tell the employer I can work on Tuesday from 1 to 4 but I can't work on Monday. That doesn't fly.
People here have said that my mom can't make her own decisions regarding placement in a facility, the social worker from the local nursing home came to the house to talk with my mom and she said my mom does have the cognitive ability to make her own decision. Me feeling I no longer have the ability to care for her has nothing to do with it, she says she wants to die in her home and there is no way to force her to go anywhere. I was told if my mom gets worse and is unable to get out of bed or becomes unaware of her surroundings, then the local nursing home would actually be able to come and get her.
It's like this, someone can refuse a blood transfusion for religious reasons even if they will die without the transfusion. Many people would look at that and think that was a stupid decision but that person can't be forced to accept the transfusion.
The big problem with the Waiver program, they spend money trying to keep my mom in her house when it's obvious she belongs in a nursing home.