My son and I were living with Mom, working and helping out financially, when she got sick. I quit my job, thinking it would be temporary. It wasn't. Her care needs increased to the point where I can't get her out of the bed or chair to go to the commode by myself. I can't count on my son to help, because he needs to work and sleep. We need his income, and he has the right to a life.

I tried getting her into a nursing home on Medicaid. The hospital said the home we selected took patients on Medicaid pending, but they don't. Right now Medicare is paying 100%, but that is ending soon. If we send her to a home that does accept Medicaid pending, they will take her checks and we will not be able to continue paying the bills on Mom's house, so we will have to let it go to foreclosure. If I bring her home, she will have to stay in bed all the time, because I can't physically move her by myself. Plus, Mom wants to go home. She hates the nursing home. They have her on pureed food and thickened liquids, and most of the time she refuses to eat or drink.

Right now we are planning to bring her home. Her care will be less than she is getting in the home, and her condition will deteriorate. If we get the Medicaid we will able to hire aides, which will make it better for both Mom and me, but there will be a penalty because I have been paying my credit card bills with Mom's money (at her request). We will have to increase the home equity line of credit to pay for the aides until the penalty is taken care of, which will increase the monthly payment to the point where we will not have enough money to pay it. Then when Mom dies, her income will stop, so we will not be able to pay the bills on the house until I get a job, and in this economy who knows how long that will take? Not to mention the fact that Medicaid will probably force the sale to get their money back.

I am worried all the time about what will happen to us when Mom dies. I want to get a job so I can at least have a chance at getting an apartment, but I can't do that right now and it is driving me crazy. I should mention that neither my son or I has high earning potential. I fear we have a serious chance of becoming homeless at some point in the future and I don't know what to do about it. It is tearing me up inside to the point where sometimes I just want to run away.

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MyName & New 2 - This is a tough situation but if it is pretty well set that you have to have mom's SS check &/or retirement in order for you not to be literally out on the street, then accept it for what it is and move ahead. This isn't uncommon and is, in my humble opinion, a huge issue for women for women in their 50's & 60's in the US.

One of my childhood friends is in a similar boat and she has kinda been at wits end as nowhere on her playbook of life was this supposed to happen. My mom is in a NH and still has her house, and she goes over there (to my mom's house) to chill out (this is the neighborhood we all grew up in) and keep from going loco in the whole situation of her mom's dementia and her financial & love failures, so I get to keep up pretty much in the dramarama of the situation. Here's my thoughts based on what she's had to deal with:
1. have them evaluated for at home hospice care. Hospice is 100% paid for by Medicare. So mom's finances aren't an issue. You have to work with her MD to get this paperwork done. Whatever you do, press upon the fact that you or your son cannot be doing, moving, fetching, for mom. If you look like superwoman the state will do a default that you will be providing all care so no hospice needed.

Shop around for hospice providers, you want to work with one that either has a in-house end of life unit & is affliated with a NH. This all because you will be asking for "respite" care benefit from Medicare for YOURSELF. this seems to be available at least once a year for 1 - 2 weeks for the caregiver to recover from caregiving burn-out. Some bigger hospice groups have these relationships set up and make it all easier on you & your son to have this happen.

2. Apply for Medicaid community based at home services. There are all administered by the state and just what you get will depend on that. JeanneGibbs on this site has great experience with all this. My mom is in NH so I never had to deal with this. Just what is done, depends on state program.

3. Meals on Wheels - again you are doing this for your mom's nutritional needs. Usually program will not provide for meals other than for the senior but most of these are run within the community and seem to find creative ways to provide for more if there is more than a senior in the home. Meals on wheels usually has a charge but waived for Medicaid recipients. My mom had Meals when she was still living at her home and it was like $ 2.50 a day and delivered each day except for Friday when they would do the daily meal and then 3 sandwiches and fruit for weekend "food". There is also a holiday meals provided at a local senior center available for them. The amount of food is pretty large - the American way - and easily could feed you & your mom. This will help on your food costs. My friend broke down over the Holidays & finally signed up for this. A godsend.

3. Mortgage/house issues - for me this is just so critical. I would do whatever to make sure the HELOC get's paid. Pay for all from mom's bank account. Try not to co-mingle $$. If you have been a full time caregiver for mom for at least 2 years, and that time & caregiving has enabled mom to stay at home and NOT in the NH paid for by Medicaid, then the house will be exempt from any Medicaid recovery
(this is the MERP program) after mom dies. You have to file for this after death exemption from MERP, but it is designed for the situation you find yourself in.

the state will not "force you to sell the house". Believe me, there is no way any state want in the current real estate situtation a market flooded with a bunch of old people's homes with likely decades of delayed repairs and upkeep out there for sale. What the state will want - done through the MERP program - is proceeds from the sale of the house to help defray the costs the state spent on the NH stay by Medicaid. There are exemptions to MERP and you qualify for the caregiver one.

4. CC debt. You say you have cc debt. If you do and you have no job, no source of income and have no property - basically nothing in your name and you have no assets, then I'd stop paying on the CC. Like yesterday too. There is nothing the CC companies can do to you except to hound you and turn your account over to collections. They will be relentless but really other than calling you and sending ugly letters and being a total PIA to you, there is nothing. You have nothing, there is nothing they can do. You do need to plan on being poor for however long the statute of limitations is in your state (anywhere from 3 -10 years) but really that could end up being the same amount of time that you spend taking care of mom. Lets say, Susie has 80K in debt and she stops paying totally today. Susie doesn't work, so there is no income or paycheck anybody can attach or put a lien on. Susie stays at mom's house and takes care of mom but doesn't get paid. She does this for 4 years and then mom dies. The statute of limitations in Susie state is 3 years. So at the end of 3 years, she has no debt and then spend the last year caregiving for mom with no debt and then after mom dies she inheirits mom's house with no MERP by the caregiver exemption and can move on with her life.

With CC it will get ugly and a couple of the CC companies (like Discover) are big on filing in court to get a judgement against you. But a judgement on someone who has nothing doesn't matter. In most states, they have to pay to renew a judgement and most companies just don't do that, so the judgement is not enforceable if that happens.

5. bankruptcy - personally I would avoid this as it makes it really hard to do things, even simple things. If you don't own anything and have no job, then I'd go the it's just too bad for the creditors approach and not file bankruptcy. If you need to get a job later on that involves a security clearance check and the bankruptcy filing can kill the application for the new job. This is what happened with my friend, she filed bankruptcy because the calls, letters, were just getting to her and it seems like an easy & cheap way to get it cleared. But there has been alot of blow-back in her being able to do stuff that involves any credit check.

This is alot to think about. Most cities, if there is a law school, will have a pro-bono clinic (free or sliding scale for payment) for consumer issues like these. Call about and take advantage of it. Also you want to make sure you have all the current legal on your mom - like a DPOA, DPOA, Advance Directives (if she goes on hospice, they will require this). Good luck ladies!

I knew a lot of my patients' families had equipment they could use as solo there are techniques and equipment that help when the transfers are not total lift. We used a standing disc with my mom. Good technique is essential and a good PT should be wiling to train you.

My mom is coming home when her 20 days of Medicare 100% coverage is over. She does not suffer from dementia, so I was able to explain to her that she would have to be in bed most of the time because I can't lift her by myself. We are getting an aide to come in through a hospice agency. As far as using the Medicaid, we will decide what to do when the time comes.

Navigating the elder care system is like a chess game- you have to think ahead several moves, and take the move that seems to offer the best chance of success. But you don't really know what will happen until you see what your opponent will do. I think I have made the best move for now. There is nothing more I can do until I get a decision about Medicaid. So I am going to give myself a break from worrying until that happens.

I am in a very similar situation. I will be following this post for helpful advice.
Folks don't realize that we CareGivers have a hard job and have to wear many hats. We are living in a constant state of uncertainty. A mental, physical & emotional roller coaster.

Thank you all so much for your concern and your advice! I do think seeing an elder care attorney would be a good idea. I have a couple names. If I had set up an agreement when I first started taking care of her, it might be easier to get Medicaid now, but I didn't know! Maybe a lawyer could help get some of that stuff written off. I have also heard that they might not take the house if a caregiver has been living there, but I understand it's not automatic. Again, a lawyer would help.

As for the Hoyer lift, the rehab people said it took two people to operate it. Maybe I should get a second opinion on that.

Would Mom be better off in a nursing home? Yes and no. I think she would benefit from the physical therapy and timely medical care they get in a facility. I was hoping the physical therapy she was getting would help her get up and use a walker. The problem is, Mom is very unhappy anywhere but home. She doesn't work hard in therapy, and barely eats. So I think home is best for now.

Thanks again. It's good to be able to vent to someone who isn't trying to get money out of you. :)

Call " In home supportive services " They will assist you in getting paid to take care of her.

can you get a patient lift so you will be able to move her without hurting yourself? the basic models are not super expensive

mynameisprivate, this really does sound awful. I sincerely believe things will work out and you and your son will get through this.

The Medicaid penalty is because your mother gave money away -- to you. If she had been paying for her care there would be no penalty, and she could have been paying for you to help her. Sigh. It is too bad it wasn't set up that way all along. With the help of someone who understands the Medicaid rules, perhaps something can be done now to explain that this was not a "gift" it was a "payment." I don't know if that can be done, it it is worth inquiring.

And as 2pinkroses says, if you have been taking care of Mom in her house, the state is not going to be taking it away from you for recovery.

But that still leaves you with paying for the house. You say that you and your son don't have high earning potential. Those are precisely the jobs that are available regardless of the economy. I suspect you'd be able to get another job quickly. And in the future maybe you can upgrade your job skills (although not while you are also involved in your mother's care.)

If it weren't for the financial aspects, do you think it would be better for Mom to be in a nursing home with 24/7 care available, or to come home?

Hugs and hugs to you - I understand how concerned and worried you are; and rightfully so. To ease your mind, have you considered talking to an elder care attorney? Most will give a one time consultation with no charge. If you have lived with your mother for 2 years - I don't think they can touch the house. Also, is your name on the deed?

As stressful as it is, try to think positively - you will not become homeless - something will work out for you. Even try Elder Services in the town to speak to someone who might be able to give you some guidance.

I do think speaking with an attorney will ease your mind and give you the correct information that I, unfortunately cannot. Call around and ask for a consultation - make sure they specialize in elder planning. Blessings to you and hope someone can help. Will keep you in my prayers. Take care.

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