I got into a heated discussion with my mom's caseworker and she has referred me to a counselor for mental help. I've been staying with my mom for the past year. Nobody else can or will help, it's just me. I finally got my mom on Medicaid Waiver, I was upset because they approve my mom for 31 hours then give some of those hours to a home care agency so I can only get paid $14/hr for the hours they don't work. If they work 10 hours then I can only bill for 21 hours, accidently bill for an extra hour and somebody has to pay the hour back, yet they can pay for a $15,000 renovation to make the house more 'accessible'. It didn't help that I found out that they can't just replace a bathtub, it has to be a major renovation or their contractors won't bid on it. I was told that the project could not be halted because the contractors have the materials ordered and they can't get paid until the work is completed.

We should have never permitted anyone to come in the house. My mom with her dementia couldn't possibly understand what they wanted to do, she signed their papers because she thought if she did she would never have to go to the Nursing Home, but I don't recall anybody saying that. Now she doesn't want the contractors coming in here hacking up the house. They will have to take out part of a load bearing wall, remove a closet, expand the bathroom into the closet, tear up the flooring down to the floor joists, install a walk-in shower, change the sink and toilet around, widen the doorway and move the door 5' to the East. They are installing new flooring and new wall coverings, and we have no say in any of it.

My mom's case worker said "I asked you if your mom would be okay with the construction and you said she would". Well she was okay with having a new furnace installed. She also said "You were sent a copy of the blueprints, it's not my fault if you don't know how to read a blueprint". My mom is 96 and will not ever have 'independence'. I will still have to help her to the bathroom and to use the porch lift. She told me I have to allow them to build a new wood deck with a lift on the front of the house, but after it's installed I can remove it and haul it to the dump.

I've been thinking about moving out, but I know my mom would just lock the doors, sit in her chair and wait to die. She wouldn't eat, take her meds or anything. It might convince her to go to assisted living if I left but I'm not sure if assisted living would take her. She says she won't go to a nursing home and nobody can make her. Right now, I can only get the home care agency here for a few hours a week and that's it. Since my mom is on Medicaid Waiver they just take her when they have time, self pay is $30/hr. but they only get $20/hr. from Medicaid. Sadly they only give me $14/hr. and I'm here all the time doing everything for her.

What I really need is to spend a few days on the lake fishing not some shrink.

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Your mom saying it's her God-given right to stay in her home forever and you have to care for her? what world?

I've gotten so immune to mother's tantrums about 'never being thrown in a dump of a NH' that I don't even hear her anymore.

If you feel that she needs that level of care, then you should be moving in that direction. You're shoring her up by allowing all these modifications to be made. Is she really able to OK all this very expensive work? Does she think so much of herself and so little of herself that she really thinks your life is worth nothing more than being her slave?

If you move her into a NH, yep, she'll kick up a fuss, for sure, but you are a person who is completely burned out, financially strapped(my guess) and you feel totally unable to move forward.

What's the worst mom can do to you if you have her placed in a NH or some kind of ALF? Hate you forever? Sounds like she's not a big fan of you right now.

I can't wrap my brain around the regulations and such that are attached to doing work on the house to make it handicapped accessible.

A permanent vacation from CG is what you need, not a week at the lake.
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Reply to Midkid58

"You don't know the half of it. I wanted a ramp built for the front of the house, my mom's case worker told me not to pay for it myself she would put in an authorization with ATP to have the work completed. "

You need to check state laws, because depending on where you live, you could put a secure mortgage lein on the home with a promissary note which outweighs Medicaid. It just became law here, I found out Tues when I met with a CELA in my area.
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Reply to Stacy0122

Offer to pay the restocking fee for returned materials. When they show up to do the work, call the police and have them removed.

You sure you do not live in Michigan? Sounds like you have the same whack job SW that calls my house. She told me I had to buy a Lincoln Nautillus to drive the person in my house around, lol. It did not fly at all.
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Reply to Stacy0122

A vacation isn't going to change any of this. You currently have folks tearing into the structure of a home, and a fishing trip isn't the answer. Either a Licensed Elder Law Attorney or a counselor, or BOTH, might be a better answer right now.
I think that the counselor would allow you to explore with him or her the fact that you are right up against the wall of your own limitations. It is human to have them. This is all more than you can handle. Your Mom will likely now need placement whether that is something she wishes to have, or not. This whole thing in some states where medicaid is doing this construction work with "approved vendors" almost sounds like some governmental scamming of the tax dollars, but that's neither here nor there.
Your posts show you to be increasingly helpless between the needs of your Mom and the governmental takeover of her home. I think perhaps you should consider letting them take over completely, since in every way they seem to be doing that. Tell them that they need to consider State guardianship and conservatorship and taking over care of your Mom, which they seem now to be doing in any case. You may have to step away. You cannot be expected to handle all of this, really.
I wish you the best but this seems to be going from bad to worse with all of this.
Have you seen an Elder Law Attorney yet, as has been suggested to you? He or she may be able to get this "project" stopped right now. If you are POA (I cannot remember) this can be paid for from your Mom's funds for the legal advice she needs. If she was signing things when not competent to understand or sign them especially. This is becoming a real mess.
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Reply to AlvaDeer
SGeorge24 Apr 8, 2021
You don't know the half of it. I wanted a ramp built for the front of the house, my mom's case worker told me not to pay for it myself she would put in an authorization with ATP to have the work completed. The ATP rep said they can't build a ramp, not enough space so they have to break up and remove the cement front step, build a new wood deck, level the ground to the West of the step, run a cement pad for a base and install a lift, no idea how they will get the electric to run it. The truth is, building a simple ramp isn't a big job and isn't worth a lot of money so the ATP rep made the job as big as they could. When I called ATP they said my mom signed the contract to have the work completed, the contractor was selected and had the materials ordered so and the contractor can't be paid unless they complete the project and ATP inspects it. If we don't permit the contractor to do the job they can sue us for breach of contract. However once the job is completed and has been inspected, I'm free to remove the lift and haul it to the dump. A $10,000 lift to get my mom up and down 3 steps. None of this will give my mom independence as I still have to stay with her 24/7. According to the Agency on Aging, when I moved back here a year ago, I committed myself to being my mom's primary caregiver and took on the responsibility until she dies or goes to the nursing home. The way Medicaid looks at it, if my mom goes to the nursing home, it might cost them $10,000 a month and if my mom stays in her home 1 month longer, the cost of the project wasn't more than if she was in the nursing home. In reality, hacking up the house won't keep her in it much longer as I fully intend to get her placement and take my life back as soon as I can.
That fishing trip sounds really good. Self-care IS important.

Time away can often offer clarity too - a wider perspective that is too hard to see if always up close in it.

Call the agency, tell them you will be away XYZ days & book aides to cover your time away.

Are there any barriers stopping you from doing this?
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Reply to Beatty
SGeorge24 Apr 8, 2021
I'm expected to stay with my mom 24 hours a day 7 days a week. I tried this and the agency told me unless I could find someone to cover for me, I'm stuck here. It's impossible to find aids who are able to cover a whole day. Medicaid Waiver only pays for 8 hours, self pay is $30/hr. Neither my mom or myself could afford that.

My mom just keeps refusing to go to a Nursing Home and goes ballistic whenever somebody mentions it, we just can't talk to her without her screaming, hollering and carrying on. My mom said it's her God given right to remain in her home until she dies and it's my duty to care for her. Nobody else can or will help.

All a counselor could do for me is help me to accept the situation I'm in. When I complain about never being able to leave, how little I'm being paid or my mom's renovations, I just cause other people grief, so I need to learn to shut up and put up.
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