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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.
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Beatty Feb 2021
Beautiful answer, very well put.
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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.
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I ended up putting my mom in a nursing home where she looks so sad. I often think what it might have been like if I could have kept her at home but we did not own a house. Will you inherit the house eventually? If so that will be good for you. Hang in there.
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AnnReid Feb 2021
What do her caregivers say about her demeanor WHEN YOU’RE NOT PRESENT? Does she look so sad for your whole visit? Does she enjoy activities when you are not present? THAT’S IMPORTANT TO KNOW.

If you think about “what it might have been like” are you taking into consideration that the cost of HER SMILE might well have been your physical/mental/emotional welfare?

I didn’t want my mother’s house, and we sold it to one of her dear caregivers from her nursing home, and used the proceeds to pay for my mother’s care.

Tryinghard1, are you “trying had” to live YOUR LIFE as happily and comfortably as you possibly can? If you’re not, can you place a little more focus on YOU?
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SCGeorge, I’m with you. To be blunt, the SITUATION is crazy, not you.

Slavery was abolished in this country long ago, but somehow you have become enslaved by your mom’s Medicaid program! As a family caregiver myself, that’s not OK with me.

Perhaps you might go ahead and utilize the counselor if you think he or she might possibly advocate for you or give you some ideas to GET OUT of this mess, not just cope with it.
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my2cents Feb 2021
snoopylove No, she hasn't become inslaved. She had to agree to become a paid family caregiver. If she didn't want to be one, the agency would cover the 31 hours allowed to mom. Then she could go outside the home and get a job to work while caregivers are w/mom. Or she could opt out of caregiving all together and mom would get a medicaid bed in a nursing home.
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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.
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notrydoyoda Feb 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.
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I'm just wondering why you have to share the paid hours mom gets with an agency? Is that the rule in your state?

If so, I can certainly understand your anger and frustration!

I'm going to assume that your mom's care is being paid for by some form of medicaid, yes? If that's the case, have you confirmed yourself that this agency "has" to get some hours? And have you confirmed that you "have" to leave your home when they're there in order for them to get paid? I would think, from a dollars and cents point of view, the state would rather pay a family member than an agency, just from a liability point of view. And I'm sorry, but this agency trying to throw you out while they're in the home just strikes me as odd; I had a myriad of different people come in with my mom and no one *ever* told me I had to leave!

I would start by confirming what this agency is telling you with whatever entity is paying the tab. If you are having paid caregivers come in to give you a break, I get it; but maybe it's time to, at least, seek a new agency, one that seems to help you more than you feel that this current agency is doing.

If you are looking to be the sole paid caregiver, then I would contact a social worker who does private assessments and speak to them, rather than use one associated with a care agency. There is language you can use when you apply that will help you get closer to the hours that your mom actually needs care; a lot of times, it's all in how you word your responses, and that's where a private-pay social worker can really help. You can start calling your county's area on aging and ask if they can recommend anyone who does services like that. Maybe in talking to an independent person, you can get mom - an therefore yourself - a lot more services than what you're currently receiving.
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SGeorge24 Feb 2021
That's how the Agency on Aging approved it. They said my mom can only get 31 hours because I live here, but she would only get 35 hours if I didn't. It doesn't make sense that they can say that she can't ever be left alone, even for a short time but only pay 31 hours. I got called on it because they were here for 4 hours the other week and I was thinking they were only here for 3 hours, so I over billed by 1 hour.

Makes less sense I was approved for up to $17/hr. but they only authorized me to bill for $14/hr. What's really screwed up is the Home Care Agency gets to bill for $20/hr.
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An emotional support animal, lol. They give you antidepressants and Xanex to deal. So out of curiosity, why did you not ask to speak to the case manager's supervisor?

As I suggest before, did you call the omsbudsman office to learn the actual laws for care in your state?

No, you do not need to leave when aides come.

To be honest with you, case managers are stupid. I try to have fun with it. The case manager and "family" installed streaming cameras in my house so family could watch and record at all times. It records audio too which is against the law. So the camera at my front door, not a her area is now attached to the litter robot. One camera is moved to the utility kitchen so they can watch workers heat my house with a stove...just think, if they burn the place down. Then the camera upstairs, they have rotating from the bathroom into her area, uh, my grandma decided to visit and walks outta the bathroom nude, so they can hear her call them perverts for looking at a poor old lady.

Your mom can have all the rights she want and it is Medicaid's problem to deal with. You can say,"I have the right to refuse."
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notrydoyoda Feb 2021
The meds are given to stabilize the person so they can talk about and deal with their issues in therapy. Meds alone slove nothing and therapy alone doesn't solve much. Plus, the therapist can only suggest meds that only a psychiatrist can prescribe based on both the therapist's input and meeting with the person. I know this because I have been in therapy for 19 years, first dealing with problems concerning my wife's personality disorder, then memories of abuse from my mother that surfaced as she declined, and focused on me apart from the other two issues. Like in the movie "Ordinary People", you start out talking about others and then yourself. A good therapist will already have an idea of your own issues, but he or she deals with those as she waits for teachable moments to deal with other things. For instance, my current therapist, a man, had already perceived that my mother had abused me before I actually said it. A previous therapist, a woman who retired, said that one day I would see how my mother hurt me and hopped that I would be able to forgive her which I dealt with in meeting with my current therapist.

That being dealt with, I am ready to change to a female therapist for we now live an hour away from my current therapist and he is getting old.
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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.
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a repeat, sorry
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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.
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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.
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tfalohun Feb 2021
Very well articulated. Stating it in those terms is incredibly powerful
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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.
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Seems your mom needs help 24/7 and you are getting burnt out being the caregiver. Your mother would probably has a lot of anxiety with people coming and going. She needs a consistent schedule with a small number of people providing her care. It might help her agitation to start taking a mild anti-anxiety medication so she will allow others to help her with her health needs.

I understand that you feel trapped financially in this situation. I would suggest using the time the home health aides are present to look for jobs you can do at home. When the aides are present, then you can do some part time work (maybe online customer service). When your mother rests during the day, you could also do some work as well.
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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.
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cetude Feb 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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I understand your dilemma. It is a really tough position to be in. Because of Covid, there are many jobs that have moved to remote and many people are working from home. They are teaching from home, they are scheduling appointments from home, they are working customer service from home. Ideally, while you are helping your mom, working from home would be optimal. I realize that finding that perfect job to dovetail with your caregiving responsibilities might not be easy. As to the outside caregivers, I would stick around until you know it's working but do get out of the house whenever you can. A change of scenery is therapeutic and who knows, might allow you to find that job you need. The more you interact with the outside world, the more aware you will be of any opportunity that you might find. Here's an example. I was working a job that required taking coursework in order to get a raise. The class that I signed up for got cancelled leaving me in the lurch. I was at the laundromat at 6:00 am (before work) where I got to know another early bird who linked me into an independent study class that was actually better. Who knew that doing my laundry at that god awful hour would lead to an excellent solution to my problem? But it did. So, take advantage of those opportunities to get out of the house. Go for a walk, get a cup of coffee, and remind yourself (even in this time of the pandemic) of the big wide world. I understand your feelings about counseling; somehow their advice doesn't quite fit a person's predicament. But it is definitely worth trying, even if you only get one good piece of advice that works for you. That one thing is something to build on.
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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.
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Finstead thing...
CHANGE AGENCY! Get an Agency that will send someone on your time, not theirs. Lots, of Agencies out there.

Just have an Agency come once a week to help or not come at all so you can get all the hours.

Then you hire someone yourselve for $8-$10 an hr for several hours, once a week to give yourself a break.

It could even be a College Student.

There are many jobs that you can work from home.

You might even consider taking in another elderly that can mostly do fir herself, that just needs someone around and get a couple thousand a month.

Or, you might Rent out a Room and get $500 a month.

can watch your mom for
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cetude Feb 2021
Depends what state you are living in. Florida has very little in terms of services. If you think hiring someone off the street, they can CLAIM to get injured on your property and turn around and sue you. You also do not know what you are allowing in your home.

You need to get help from a reputable agency that has workman's compensation insurance. A CNA is about $35 an hour. A sitter--who does nothing but sit--is about $20 an hour. Sitters do no hands-on care.

Yes there are jobs you can work from home, but they are also in short supply due to high competition. and it depends what your skills are.
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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.
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Make sure that your mom's paperwork is in order. Do you have Power of Attorney for her medical and financial decisions? She also needs a living will with her medical instructions. Some banks and financial institutions (like credit card companies) also require their own POA forms, and you should be on file with Social Security and Medicare to speak on her behalf. If she owns the house, she also should have a will. You are making a lot of sacrifices for her. She needs to make things easier for you. I don't understand why the agency that is providing care is not accommodating your schedule. There is no reason why you should have to leave your home when they come to help your mother. You should be able to observe how they work with her and what they do. Lock up financial papers and valuables when others are in the house. Get in touch with a local agency or social worker who can explain your options to you, and might also be able to advise you on how to prepare yourself for working at a future time. Can you use this time to gain more skills? There are a lot of free training opportunities online.
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my2cents Feb 2021
NYCdaughter - The agency gets directive from the Medicaid program mom is on. Evidently mom's plan is so many hours spread over a 4 day period. They have others on similar programs so it is difficult to do specific days with the other patients they have to see as well.

The post says daughter went off on the caregivers, so one may be able to assume the caregivers are asking her to leave when they arrive to give her some time away from the house - that's one of her complaints, being in house 24/7. It may also indicate she is arguing with them about how the hours are arranged while they are there. Just based on her own words that when she went off on these folks, one of them suggested counseling.

I've thought a lot about this post and what can be read between the lines. It may well be a toxic environment. It would appear that her big goal is to be paid for all of the 31 hrs available through Medicaid and that's just not going to happen.

Think about all of the caregivers out here who do not get paid to help a parent because the parent is not quite low enough on the income scale and have no access to this many hours per week of assistance. Even if she doesn't leave the house, respite for a few hours is being provided so she can retreat to her bedroom and have some quiet time, but she is failing to see that.

Great idea on the continued education while at home. If nothing else, she has experience in caring for people, has been getting paid as an agency employee to do so, and that will be a positive on a resume. And she already knows an agency will pay $14 an hour for this service. That's pretty good money in some areas.
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You have a lot of stressors in your life and little control which, understandably, has made you angry. In my opinion, a counselor will help you with the emotional part of your life. I hope you go to counseling. Blessings to you. This isn’t an easy road. Keep coming to this site and venting.
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This agency doesn't seem to be very accommodating or necessarily professional. I would be very skeptical of any counselor THEY would suggest, and might seek out another agency on my own that would help you link up with services that might benefit both of you now, continuing with you in the future. For instance as a start, medicaid and food stamps. I'm all in favor of support animals, but I can't tell from what you've written how that will benefit either of you very much, aside from comfort and companionship. You might want to check into work at home type jobs. You have so much on your plate. I'd guess this generates much anxiousness about the future so can see where having someone to talk to might help, and maybe that person would know of other resources...please also check your legal standings...hopefully when your mom passes the house is still yours to live in...but is the paperwork in place to assure that? ANd will you then have enough income to manage that? Elder law is complicated. Take care....and know you're not alone even if it seems that way at times...
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Thoughts I have about them asking you to leave when they show up;
1. Your mom, like a toddler, may act better with them if you aren't around.
2. Without meaning to, you are telling them how to do their work.
3. Your anger and rage at the system seems to come through loud and clear. These people are just workers, not supervisors. Is your anger showing through while they are there?

You desperately need to take the time they are there for yourself. Go for a walk, go to a library, go to McDonalds, go to a store and just stand there and decompress. Get away from the situation for an hour or two. If I was you, I would be standing at the door with car keys in my hand. As they walked in, I would walk out and slam the door. I used to do that with my husband when the kids were little. Sometimes, I would just go to the store and stand around.
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Imho, this agency doesn't appear to be able to be accommodating. Prayers sent.
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Do you have family to help you care for her? I don’t understand why the agency wants you to leave when they show up, that’s very odd to me? Something doesn’t seem right about that. Does your mom have money to hire a private caregiver? I would look into your states services for the elderly to see what other programs she may qualify for. Also, since you are her main caregiver the state could be paying you. If your mom doesn’t have access to cash for a caregiver and she owns her home she may qualify for a reverse mortgage to help her pay for caregivers. Perhaps she can pay you if this is something you want to take on until she passes if you don’t get any help from any other source? Also when she passes I’m sure you’ll inherit the house. Don’t be so pessimistic about finding a job, I’m sure you’ll find something again. There are services out there, you just need to do more research and utilize more of your states services for her and possibly for yourself. I would also make appointment with a Geriatric Psychiatrist and a Geriatric Doctor seems she needs some meds to help her cope with her condition and help you understand her medical needs.
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