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A bit of backstory: six years ago, my mom was diagnosed with end stage renal failure after not having kept her diabetes in check her whole adult life. We found this out right after moving out of our family home after her and my dad's divorce. We lived together for three years, and I was everything in a caretaker that I could be: taking her to dialysis, watching what she ate, it was all pretty simple at first. She decided to move out on her own after tensions started building between us, and her health quickly started to deteriorate. Due to complications with her disease, she has since had her foot and a finger amputated, suffered a severe heart attack, and has overall heart problems. She is fairly dependent on others for living as she is confined to a wheelchair and doesn't do any sort of exercise to keep up her strength.


She had to have a follow-up surgery on her amputated leg about a month ago and has been at a nursing home/ assisted living facility since for rehab and care.


Due to some divorce agreements, my mother had come into quite a bit of money upon my dad refinancing their house and basically buying her out of her part of it. Not enough to live on forever, but enough that she now has a sizeable savings. That, combined with my mother's insurance terminated and subsequently refiled for after she moved out of state, has led her to be inelligible to reapply. We have had lawyers involved but no one seems to think there is anything we can due to get her reinstated with insurance.


As of now, she is still at her long term care facility, but racking up quite a bill (we were hoping insurance would back-pay when everything got sorted) with no possibility of insurance. She needs constant care and help with daily living habits (i.e. going to the bathroom, dressing, showering). The facility said that the only real option, however, is that my mother moves in with me.


I am 28 years old. Between coming home to be supportive of my younger sister during our parents' divorce to taking care of my mother for several years, I have put my own life on hold. I have yet to finish school for various reasons, but a major factor being that I keep taking time off to help with everyone else's needs. I feel like my life hasn't been my own for the past six years. And now, just as I put my foot down last year and tell my mother that I am unable to take care of her, she is shoved right back at me with even more problems than before. I feel like a failure of a daughter, but the thought of her living with me again is nearly unbearable. There doesn't seem to be any other option, though, and I feel backed into a corner. This will not be a healthy situation for either of us, but I don't see what else there is to do!


If anyone has any advice on any sort of actions that I could look into, they would be greatly appreciated.


I have been taking care of my mother off and on for the past six years and it has greatly impacted my life in negative ways. She is currently ineligible for Medicare/Medicaid but needs a place to live that provides care. It has been recommended that she and I find a place to live, but I don't know that I can handle all her needs and am looking for advice.

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You shouldn’t need legal advice about this. The insurance is a dead duck – they are clearly treating your mother as a new insurance issue, and her risks are much higher now than they were in the past when she took out the old policy. The facility will now need to be private pay, until your mother is eligible for Medicaid or Medicare again. Does the facility understand that your mother can pay? They (and the first lawyers) may have got tied up in the insurance issue, because it sounds unlikely that they would want her to leave if they know she has the money to pay.

It may be remotely possible that Medicaid will want to be repaid all the money that they paid out in the past, before your mother got the inheritance. If that’s the rule, it will cope with the spend-down issue straight away, so it may not be too disastrous anyway. Contact Medicaid and ask. They know their own rules better than most lawyers. Otherwise your mother spends down until she is eligible again. As Mstrbill says, it’s a good idea for her to be in a facility where eventually she can be a Medicaid resident.

Try your question on a friend first – this is complicated, and I certainly didn’t get the real picture initially. Make sure that you are making the situation clear when you ask.
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Reply to MargaretMcKen
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Kirsten - I feel for the situation you're in. No, you don't have to take her to live with you, and nobody can force you to do it. Of course the facility wants to find a solution for her, since they can't keep her there indefinitely, but that doesn't mean you have to take her. Keep in mind that she could live for many years in her disabled state, and her care needs are likely to only increase as she gets older. As long as she has funds to pay for her care, let her stay where she is or have her moved to another facility that has a bed for her.

I'm not clear on what you said about your mother's insurance. Do you mean medical/health insurance, long-term care insurance, or publicly funded benefits such as Medicare or Medicaid. I don't think anyone can advise you about the possibility of reinstatement until it's clear what kind of coverage she had that has now lapsed.
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Reply to CarlaCB
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KirstenS Feb 27, 2020
I'm sorry for the lack of clarification, yes, she had both Medicare and Medicaid. She did not have any long term health insurance, but that might be something we look into.
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Kirsten, you have two separate issues – one is insurance eligibility, the other is care costs. You have the answers here, but you also need to untangle them in your own mind. Your mother could take out new but expensive insurance, but you are told that she can’t go back onto the old policy. You need to work out if the cost of new insurance is worth it. For care costs, if she has the money she has to pay for care. When and if her money runs out (actually is not more than $2000), she will be eligible for Medicaid. That wipes out your inheritance, but it leaves you with a life! In the meantime, in order to be eligible for Medicaid in the future, she can only spend on her own needs (eg the care facility). This is called ‘spend down’. If she just gives the money away, it will mean that there will be a period when she will have no money and won’t be eligible immediately for Medicaid. The period will be calculated by working out how much care time her gifts would have paid for. Don’t let her do it, or you really may be faced with no options except yourself.
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Reply to MargaretMcKen
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Since ACA has not been repealed your mother should be insurable, although most likely at a very high rate. She probably cannot be reinstated to her old insurance, but that's not the same as not being able to get insurance. First thing is to get her insured.

With your mother's health concerns and no or expensive insurance, she is going to be broke and on Medicaid someday soon. I suggest you start looking for an AL apartment which accepts Medicaid payments after a period of private pay. Even if you need to stay in the apartment with her and sleep on the couch when she is first discharged, please get her setup in her own place where she can receive the care, meals, housekeeping help, and transportation services she will need so you can walk away and live your own life.

If your mother can qualify as disabled, she can draw SSD and be eligible for Medicare as her primary insurance which may reduce expenses as help her private pay the AL for a longer period.

You are a very good daughter to have helped your mother so much in the past. You have a right to live your own life too. Going forward, be your mother's advocate and maybe very occasionally helper. Finish your education and start your own career and family!
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Reply to TNtechie
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KirstenS Feb 27, 2020
Thank you for the advice, yes, until this insurance mess kicked up, we were looking into AL. Luckily we have many places around here, it's just this bridge in time of "what the heck is going on?" that is so stressful. I think I'm going to meet with a lawyer of my choosing for Medicare, I don't see why that one is so difficult for the facility to get her back on, ESRD qualifies a person as disabled, so I would think it would be a simple (to use the term lightly) reinstatement.

I will definitely look into other forms of insurance for her as well, thank you, I didn't know if anything would even be available considering all her conditions. We'll see what we can come up with!
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Don’t let the facility push this on you, Of course they will reassure you that they will be loads of help for her to find other living arrangements... don’t believe them. Once she is out their door they aren’t even going to remember your name.

do not let them discharge to you. Period. If you punch back HARD, they will have to do their jobs and find a place to discharge her to that will be safe for her,

this may require the state to step in...well, ok...Sobeit.

keep repeating, I cannot provide for her. She cannot come here it isn’t a safe place for her. Just repeat that. No matter what they say.. just repeat that.
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Reply to Katiekate
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KirstenS Feb 27, 2020
Thank you, yes, they've already been laying it on thick, especially to my mom. She is stressing out because she is worried they will kick her out. I keep telling her we will hang on as long as we possibly can because she is safer there than she would be at her home essentially by herself (with me checking in of course). It has only been a week, I don't think that is nearly enough time for them to be making threats at this point, but I have set up a meeting with them tomorrow to tell them my point of view.
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You do not have to take her to live with you. Period. What happens is her savings go towards paying for her care, then when her money runs out she will be eligible for Medicaid. If you feel it is too much for you to handle her finances and application for Medicaid it may be best to hire an Elder Attorney. Usually though, the facility's office manager is able to help you with it. Realize though, you don't have to be forced to take care of her if you are not able to, and it sounds like it will too much for you to handle. You can get the State to take guardianship of her if it comes to that, but it shouldn't get to that point. Have her spend her savings down on her care then transition her to LTC Medicaid. If the facility she is in doesn't have a Medicaid bed, she may need to be transferred to one that does.
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Reply to mstrbill
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KirstenS Feb 27, 2020
Thank you for the advice, so if we spend down savings, that will re-qualify her? They tried to explain it to me, but I was a bit unclear, because it seemed as though regardless of spending it or not, the fact that she had it to begin with makes her ineligible. They passed her case on to some lawyers at the facility, and they didn't have very high hopes for her plight. I'm not sure if that was just them not giving it enough time or what, but I'm looking into hiring our own lawyer for a second opinion.
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