My mom is on Medicaid Waiver for home care and I've been caring for her in her home since last March. I didn't get her on Waiver until December because we applied for the wrong program first, so I received no pay for being here March to December 2020. It doesn't help that my job was promoting me to shift supervisor when I had to leave because my mom got worse and couldn't walk without assistance. I tried taking FMLA, but my mom absolutely refused to go to a Nursing Home. "NO NURSING HOME! No! You can't make me! I was born in this house and I will die in this house! It's my house and you can't make me leave it!" In October my job officially ended and I'm barely able to get out of the house.

My mom was only approved for 31 hours of home care which I have to share with an agency that currently comes several hours per week on Tuesday so I've been averaging around 24 hours @ $14/hr and that's my only income. I'm stuck here 24 hours per day 7 days per week but I'm only paid for 24 hours. I was talking to my mom's case worker and the agency wants to start coming 16 hours per week so I would only get 15 hours if that happens. They can't come on the days/times that I want them, they have to come according to their schedule so it makes it difficult to even have a part-time job.

My mom hates several people from the agency and doesn't want them coming back. She got mad because she had to sign some papers. It's been almost impossible getting her a bath, the agency sent out 2 people to assist with her bath and my mom told them they could just leave because she wasn't taking a bath.

I was getting mad because I wanted the agency to come on Thursday, but they can't come on Thursdays, They wanted to come on Monday, Tuesday, Wednesday and Friday for 3 hours each day and 4 hours on Saturday. Then they expect me to leave the house and go do something else when they show up. The agency complained to her because it was -22F Monday night and I didn't want to leave the house Tuesday morning with they showed up.

I had some select words for my mom's case worker and she told me I needed to get some professional help and wanted to refer me to a counselor. She said they could possibly prescribe an emotional support animal. Fat lotta good that would do, my mom doesn't allow animals of any kind in her house.

After my mom goes into a nursing home or dies, I lose what little income I'm getting and I don't know if I'll even be able to get a full-time job around here. How is a counselor supposed to fix that?

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1. Help you with boundaries.
2. Help you with feelings of hopelessness and fear.
3. Help you regain a sense of confidence so that you can move forward.
4. Help you with a sense of perspective and identity separate from your mom.
5. Help you with your anger and other emotions that I'm reading here.
Helpful Answer (22)
Reply to NoTryDoYoda
Beatty Feb 19, 2021
Beautiful answer, very well put.
Your story is very complicated, but there is one thing that stands out clearly. Your mother is making the choice to stay in her house, and both of you think that forces you to stay there too. You need to get away – find somewhere cheap to stay for a few days. Mother NEEDS daily assistance. She WANTS you to provide it so she can stay in her own home, but she CAN’T force it on you. You don’t have to do it!

Other options will then turn up. All the other issues will change. You may need to find a job, even if it means moving away. All the crazy details about the care agency and Medicaid rules will be different.

This will take courage, and a counselor may be able to help you with that. At least find someone to talk it all through with you. You feel completely stuck, and some help would be good. Don't believe that nothing can be changed.
Helpful Answer (13)
Reply to MargaretMcKen
tfalohun Feb 22, 2021
Very well articulated. Stating it in those terms is incredibly powerful
Counselors don't fix anything. They help YOU find a stronger you, who can make your own choices to fix your OWN life. No one will be riding up on a white horse to fix it all anytime soon, hee hee.
So I agree that there can be a lot of help from a professional therapist, especially one who is say, a licensed Social Worker with training in life passages work. They are very trained in your own specific problems, those you are dealing with.
A professional can also help you comb out so many issues. They can make you see that this is not the fault of your Mom; she is in no position really to dictate your life or your life choices. Whether she wants to leave her home or not is really no longer her choice if she is not safe alone. Were you to have never been born, then it would be the state who would handle her placement; perhaps the state handling it is a good option.
And yes, we see on Forum over and over and over again, children who opt to live in and care for parents. They usually end up penniless AND homeless, and without a job history to get a job. We often advise them to go to shelters until they can get a minimal pay job (they are often good at elder care) and can afford a room somewhere. So you are looking at your future.
So her is what a counselor does. A good one always has to get TOUGH. To lay out the realities you are looking at. And to let you know that they cannot change anything for you. Only you can make the decisions. Only you can make the choices. They can't. Mom can't.
Again, Counselors don't fix anything. They help you find a stronger you who can fix things for yourself. I wish you the very best.
Helpful Answer (8)
Reply to AlvaDeer
NoTryDoYoda Feb 19, 2021
Whew. I feel beat up after reading the ending of this.

A good therapist first listens and asks questions to build trust from which the two of you will work on issues. They will not just blast you away with reality. That is not a good counselor. Find a therapist who is a licensed clinical social worker. They are the best.
See 4 more replies
Yoda, telling someone they can get an emotional support animal when they are having a hard enough time taking care of themself and an elder is assinine. I do not believe you have dealt with a Medicaid case manager but they are worthless. They lie about everthing to manipulate people into caring for an elder. That is my major gripe there are agencies to help vulnerable adults yet not ones to support caregivers and that has to change. The fact they told OP, she/he would need to pay FMV rent if placed is such BS and all lies because that is what they do.

So, to the OP, I read your lawyer question so I am putting it all here. The elderly lose depth perception in baths, hence the fear of falling. Buy some decals and a bright colored mat for the tub. Call the dr and ask for PT and OT, they will do an assessment for safety modifications and Medicaid needs to do it.

As for the Case Worker, tell her you are demanding your 30 day respite. Make them place her for 30 days. In that time, apply for guardianship or get a job and leave.

I went through the exact same thing with the bs.
Helpful Answer (7)
Reply to Stacy0122

An emotional support animal is a valid thing. My son has one and it is helpful. To say all case managers are stupid is a gross generalization.
Helpful Answer (5)
Reply to NoTryDoYoda

I'm not sure how taking FMLA had anything to do with putting your mom in a home for a while. FMLA would have allowed you to take off work without losing your job for up to 12 weeks. If you were on leave, FMLA, mom wouldn't need to go into a home.

Getting the medicaid in-home agency care is a blessing that you may not be considering in its' entirety. The fact that she qualifies for a Medicaid program means she is on the lower end of income level. There are caregivers on this site who will never get any of that kind of home help over several days a week because their parent has a little more income (not much, but a little) because Medicare (for those who had enough earnings in their life) will not pay for that sort of thing ongoing. They might qualify for a nurse to drop by weekly to ck BP and say 'how are you'. They might qualify for therapy sessions to keep them moving, but it can be very intermittent based on what doctor orders and how many visits Medicare will cover. Medicare seems to reduce therapy sessions every year.

I would be tickled to death to have someone come in for 3 hrs 3-4 times a week and take care of things AND do the bath thing, but that sort of help won't happen because my parent worked enough over the years to be slightly over the income limit and free Medicaid benefits. Kind of a double edged sword: Work all your life, get disabled before age 62 - you get the SS check but have to wait 2 years for medical medicare coverage/you having to pay deductible and 20%. Didn't work/not enough work, you can get SSI with medicaid coverage at the same time - Medicaid dr accepts as payment in full. Or work all your life, retire and you get the SS check with Medicare - with out of pocket expenses and qualify for very little in the way of in-home help.

You and mom need to have a talk. She may want to die in her home, but if she doesn't utilize the people who can help her do it, she won't get her wish. She needs to be more agreeable with these people. You do, as well. There is no point in having 'select words' for the caregivers. Either let them do the schedule they set up or withdraw from the program. They have other patients and schedules set up to visit all of the patients. You work around them, they don't work around you. Based on your mom's needs they can't come in and work all the hrs in one day because that would leave her w/no agency help on other days. The waiver is specific in that your mom has been approved for a few hours x a few days a week to spread it out. If agency thinks they need to be in the home w/her more than they currently come, it's an indication they are seeing a decline of some kind.

It is interesting that you say Medicaid will 'only' pay for 31 hrs a week. The program was designed to help people stay out of nursing home. 31 hrs a week is not bad assistance. There is no program that gives free 24/7 caregiving service. If Medicaid thought she needed more care than what they allowed, it would be time to go to the nursing home because her needs have increased - not to mention it finally becomes cheaper to pay monthly for NH bed than to pay caregivers at the house.

A counselor may be able to talk issues out, It may be that some of the things you said that day went over the line and hinted at some anger issues that could come in to play dealing with your mother. Maybe you went too far.

Yes, when mom goes to facility or passes, you will lose the $14/hr you are earning. If there's no jobs in the area where the house is, then yes, you may have to go to another area. That is not a counselor's job to fix. It's your responsibility to find a job or relocate to an area where there are jobs. You already know that because you had a job to support yourself previouly.
Helpful Answer (5)
Reply to my2cents

Most parents say they want to stay in their homes and be carried out in a box. So? You are letting your mom hold you hostage. I said "letting" because even though you might not think so, you do have a choice. What if you were in an accident and died or laid up in the hospital for weeks? What then for your mom? You see, nothing is certain in this world, not even dying in our own homes.
You are not responsible for the fact your mom didn’t save money, but you are responsible for your own decisions. It sounds to me you need a better paying job so you don't end up like your mom when you are elderly. You must think of your retirement and lifestyle.
Yes, a good therapist can help with boundaries, decision making and it is also helpful to unburden on an objective 3rd party. You should avail yourself of a therapist and get your life in order.
Will your mom want to move to LTC? No, but then that is not in your control. Realize what you can and can’t control, and you will be able to move forward.
Helpful Answer (5)
Reply to Harpcat

I took care of mom for 15 years and the last 6 had to be full time. Even with insulin-dependent diabetes, chronic kidney disease and liver disease, she lived to be 90 but it was a terrible struggle to keep her well and comfortable; mom was on hospice for 2 years, but not once did we have to open that emergency pack, and she was kept comfortable to the very end.

When mom died my entire world died with her. Mom became the center of my life and I could not think without her. That is what years of caregiving does to you.

How do you think I felt when mom died I had to do all the paperwork, contact everybody, her Tri-care insurance, and I made sure Social Security knew although it is mandatory for the funeral home to do it. Mom's cremation cost me a thousand dollars, and Social Security will ***NOT*** help pay $200 for costs unless it is your spouse or disabled child. I learned that the hard way after waiting in line for hours (that was just before COVID).

Then I had to get a job. Caring for mom all those years will impact me the rest of my life. First of all if I ever "retire" I will be living in poverty. That is a big sacrifice I made caring for mom.

A counselor will NOT help you get a job. A support animal will NOT help either. A counselor WILL send you a bill which means you have to pay for it. So you better have good insurance, or find a place for indigent people who will do the counselling for free. However, getting a job is still your responsibility.

My suggestion if your mom is poor, get her in a nursing home because you MUST work for a living. Trust me eventually your mother WILL die and you will be left on your own...and you talk about traumatic you have no idea how bad that is.

I'm gainfully employed now and working toward my Master's degree at age 60. Mom died one year, four months ago and I'm still recovering from that. But I view life at face value--hey we all are going to die, and mom died in peace and I took care of her all those years even doctors said I took really good care of her.

What else are you supposed to do? Either cope with it, or crack up. I never did see a counselor -- finding and working a job has done more good for me than anything else because at least I can survive on my own.

If you are planning to put your mom in a nursing home I highly suggest you see an eldercare attorney for estate planning and getting her Medicaid ready in case she is not already on it. Since you need help getting her bathed you had better do the nursing home route. I took care of mom myself for decades.

Regardless what you decide, remember life goes on when your mom dies. The bills will not stop and you will have to work to pay for them. Well-off husbands are in short supply so you cannot count on that either.
Helpful Answer (5)
Reply to cetude

NoTryDoYoda, that was brilliant!!! I just wanted to add one more thing. Number 6. Power. A counselor will help you get your power back instead of feeling powerless.
Helpful Answer (4)
Reply to elaine1962

Alrighty then. I am not sure where all of this info comes from so OP, do you have your careplan? In Michigan, Gov Gretch made rules where you see calculations and I am looking at the thing now.

1st columun is hours allotted per week, which was 60 at the time, 2nd column is actual amount pd.: CNA $35 for 44 total 1540 plus hha $25 at 16 hours, 400. Total 1940 per week. Medicaid average $12.65 for 60 hours $759. Admin fee $201. Supplies actual $218. Supplies average $36.07.

In all states except Michigan and some places in NY, once the cost exceeds, NH cost, they put people in homes, it is cheaper. This is why SW limit hours, so they can make a profit and keep their jobs.

You need to learn the laws in your state and invoke POA to place your mom.
Helpful Answer (4)
Reply to Stacy0122
cetude Feb 22, 2021
Very true! Each state is different. In Florida, Medicaid will not pay for home health. They only pay for nursing homes and daycare for adults because nursing homes are a lot cheaper.
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