help me with home health care/senior care
November 9, 2011 5:36 PM Subscribe
hi friends, please hope me. oh, and this is in illinois, as that may be relavant.
my mother has a rare neurological disorder called MSA. it is terminal, and from the looks of things, she is in the end stages. she's in a temporary rehab home after her second near-death hospitalization in the past 4 months. the first one was aspiration (choking), this second one was sepsis arising from an untreated UTI. both very common occurrences with this disease. she is essentially immobile, and cannot exist without assistance. here's the problem(s): since the onset of this disease about 7 years ago, my father has thrown himself at the mercy of all this and has assumed the role of caretaker.
his is not nurturing, patient, or skilled in any sort of healthcare. but he's done his commendable best. what he hasn't done is face the true reality of the situation. the home she's in now is a temporary one, and they will discharge her. he has indicated that she will come home and he will resume caring for her as he has. given the events of the past few months, it is both stupid and dangerous to continue on this path. as much as he cares (and he does), she needs the care of a person who has been trained. before the last discharge in august, the social worker told him this, and he flatly stated he would be responsible for it. and 2 months later she nearly dies of sepsis in the living room.
yesterday i spoke with the social worker at the home, and we had a lengthy discussion about this, agreeing that he needs to be made aware of how far removed from reality he is and deal with the situation, as he controls her care. no one else can do it. her options would be a full-time rest home, or home health care. she is 62, and has a combination of Medicare and Blue Cross as a secondary (this is the part I'm really clueless about. what does the BCS cover? the person who can ask, hasn't as far as I can tell). her preference, as well as everyone else's, would be that she comes home and is able to live out the rest of her time (a year, maybe) in the house. now, we have a house that will more than accomodate this. there would be a bedroom for live-in care, and her bathroom and the rest of her living space easily accommodates a wheelchair.
i suppose it is possible that her current insurance coverage would pay part of this home health care, as long as her doctors prescribe the need (which they certainly would). however, i foresee her needing to ultimately end up in a facility when the time comes (she's already close to not being able to eat food at all. many people with this type of thing end up on feeding tubes, which i don't believe can be done in-home). so in this case, we'd want her on medicaid. the problem is that she isn't poor. she has enough to pay for her home health care for probably a year. and this would definitely fall under the spend-down rules. but if the disease speeds up her decline, which it seemingly has this year, we need to be prepared to go on medicaid for her. since my father has not adequately planned for this, all her money is just sitting there in an IRA. with a 7 year lead time and no chance she'd beat this disease, that money should have been dealt with long ago. medicaid only looks back 3 years.
what are the rules regarding this spend-down and/or transfer of assets? it is reasonable that she should pay for her home health care, as i'm sure she'd prefer to be at home, and this IS her retirement.. there's no reason to sit on that money (again, my father's irresponsibility and inability to deal with money/reality). and because they are married, what are the rules about what he can/can't have? can she use some of that money to pay off his/their debts? he has the title to one car, and the other has a $10,000 loan outstanding. can 'she' pay that off? he also has a substantial amount of money in the bank. is it possible that she could give some money to her children (she has stated her desire to do this, but the law may not agree)?
i know we need a lawyer, but i'm looking for personal experiences here. or even a recommendation about what kind of lawyer can help us, too..
i am going to continue speaking with the social worker. and when we have a plan, i will have her sit him down and force him to deal with this. she will do this, as it is her job and she deals with these situations on a daily basis. i have tried, and he doesn't listen to me. but fuck him, he's now put what remains of her health at risk and we can't mess with it anymore. she needs proper treatment. oh, and if it seems like i'm angry with my father regarding this, I am. everyone in my/our life is well aware of this. and if i never speak to him again after she passes that's fine. i've put so much of myself out there in dealing with this that I am just tired of butting heads with him over something that we should have been able to work together on.
she will likely be discharged in another 2 weeks, so this has to happen quickly. please help me help my mom.
his is not nurturing, patient, or skilled in any sort of healthcare. but he's done his commendable best. what he hasn't done is face the true reality of the situation. the home she's in now is a temporary one, and they will discharge her. he has indicated that she will come home and he will resume caring for her as he has. given the events of the past few months, it is both stupid and dangerous to continue on this path. as much as he cares (and he does), she needs the care of a person who has been trained. before the last discharge in august, the social worker told him this, and he flatly stated he would be responsible for it. and 2 months later she nearly dies of sepsis in the living room.
yesterday i spoke with the social worker at the home, and we had a lengthy discussion about this, agreeing that he needs to be made aware of how far removed from reality he is and deal with the situation, as he controls her care. no one else can do it. her options would be a full-time rest home, or home health care. she is 62, and has a combination of Medicare and Blue Cross as a secondary (this is the part I'm really clueless about. what does the BCS cover? the person who can ask, hasn't as far as I can tell). her preference, as well as everyone else's, would be that she comes home and is able to live out the rest of her time (a year, maybe) in the house. now, we have a house that will more than accomodate this. there would be a bedroom for live-in care, and her bathroom and the rest of her living space easily accommodates a wheelchair.
i suppose it is possible that her current insurance coverage would pay part of this home health care, as long as her doctors prescribe the need (which they certainly would). however, i foresee her needing to ultimately end up in a facility when the time comes (she's already close to not being able to eat food at all. many people with this type of thing end up on feeding tubes, which i don't believe can be done in-home). so in this case, we'd want her on medicaid. the problem is that she isn't poor. she has enough to pay for her home health care for probably a year. and this would definitely fall under the spend-down rules. but if the disease speeds up her decline, which it seemingly has this year, we need to be prepared to go on medicaid for her. since my father has not adequately planned for this, all her money is just sitting there in an IRA. with a 7 year lead time and no chance she'd beat this disease, that money should have been dealt with long ago. medicaid only looks back 3 years.
what are the rules regarding this spend-down and/or transfer of assets? it is reasonable that she should pay for her home health care, as i'm sure she'd prefer to be at home, and this IS her retirement.. there's no reason to sit on that money (again, my father's irresponsibility and inability to deal with money/reality). and because they are married, what are the rules about what he can/can't have? can she use some of that money to pay off his/their debts? he has the title to one car, and the other has a $10,000 loan outstanding. can 'she' pay that off? he also has a substantial amount of money in the bank. is it possible that she could give some money to her children (she has stated her desire to do this, but the law may not agree)?
i know we need a lawyer, but i'm looking for personal experiences here. or even a recommendation about what kind of lawyer can help us, too..
i am going to continue speaking with the social worker. and when we have a plan, i will have her sit him down and force him to deal with this. she will do this, as it is her job and she deals with these situations on a daily basis. i have tried, and he doesn't listen to me. but fuck him, he's now put what remains of her health at risk and we can't mess with it anymore. she needs proper treatment. oh, and if it seems like i'm angry with my father regarding this, I am. everyone in my/our life is well aware of this. and if i never speak to him again after she passes that's fine. i've put so much of myself out there in dealing with this that I am just tired of butting heads with him over something that we should have been able to work together on.
she will likely be discharged in another 2 weeks, so this has to happen quickly. please help me help my mom.
I can't answer all of your questions but I will give you what I know about Medicare and home health stuff. The social worker at her current facility (or their insurance department) can find out what her Medicare will cover regarding home health. If they are looking at that as a possible discharge plan, have them find out what Medicare covers. That's part of their job (like I said...the "Utilization Review" department or insurance/billing department may do that instead of the social worker, but the SW can ask them to do it). Same with the BCBS. If she is on Medicare due to the disease as a disability and her Medicare is her primary insurance, the BCBS will pick up any Medicare eligible charges that Medicare doesn't cover. Most of the time Medicare A will cover 80% of charges. If someone has Medicare B then it covers the other 20%. If she doesn't have Medicare B, the BCBS should be picking up that other 20%. BCBS may have additional benefits for home health care...once again, see if the current facility that she is in can verify those benefits for you.
She may be able to get alternate feeding at home. My stepmother was on something called "TPN" via an IV port in her chest. The home health nurse taught my dad how to flush the port and change the TPN bag (however, my stepmother had to go back into the hospital for other reasons, so that didn't last long).
Medicaid benefits (especially those for nursing home care) vary by state and by situation so it's really hard to give you specific advice. Part of it will depend on whose name is on the IRA account and who has been contributing to it. You might be able to pay off debt with it, but it may count towards your spend-down. However, having that debt paid off might be more advantageous. You and your dad really need to sit down with a lawyer who specializes in Medicaid stuff.
I'm sorry that you're having to go through all of this.
posted by MultiFaceted at 6:33 PM on November 9, 2011
She may be able to get alternate feeding at home. My stepmother was on something called "TPN" via an IV port in her chest. The home health nurse taught my dad how to flush the port and change the TPN bag (however, my stepmother had to go back into the hospital for other reasons, so that didn't last long).
Medicaid benefits (especially those for nursing home care) vary by state and by situation so it's really hard to give you specific advice. Part of it will depend on whose name is on the IRA account and who has been contributing to it. You might be able to pay off debt with it, but it may count towards your spend-down. However, having that debt paid off might be more advantageous. You and your dad really need to sit down with a lawyer who specializes in Medicaid stuff.
I'm sorry that you're having to go through all of this.
posted by MultiFaceted at 6:33 PM on November 9, 2011
For my grandparents, they were in a similar situation and I know that somehow they had to separate their finances so my grandma could get medicaid. I don't know how this is done. You should ask her social workers, as this is a common thing to deal with (from what I gather) and they know all about how to help you go through it.
I'm not a lawyer, but I'm wondering if maybe you should try to get power of attorney and be her guardian (and make informed decisions) because your father is not able to make rational decisions.
posted by autoclavicle at 6:52 PM on November 9, 2011
I'm not a lawyer, but I'm wondering if maybe you should try to get power of attorney and be her guardian (and make informed decisions) because your father is not able to make rational decisions.
posted by autoclavicle at 6:52 PM on November 9, 2011
I don't know about any of the legal or financial stuff, but a feeding tube into the stomach (i.e., through the skin of the abdomen, not through the mouth) can be done at home, if she can get a caretaker who'll attend to it properly. I'm not sure if that's the kind of feeding she will require, but just wanted to note it - check with doc before assuming that feeding tube will be the thing that takes her out of her home.
posted by LobsterMitten at 7:21 PM on November 9, 2011
posted by LobsterMitten at 7:21 PM on November 9, 2011
If you really feel that her illness is terminal, you might want to discuss hospice with her doctor. Her doctor would be the one who would make the appropriate diagnosis and write the orders transferring her to hospice care. Hospice is not a place. It is a combination of services. There are nurses who can come to her home on a regular, as well as on-call basis. There are nursing assistants who come around to assist in giving medications, helping with bathing, etc. Their are volunteers who help with all manner of things like hanging out while the family care-giver goes shopping, maybe going shopping for them, whatever. (I've washed dishes and folded clothes.)
It is not a service for those who are struggling to prolong life at all costs, but is a tremendous comfort for those who have come to recognize that a transition to the end need not be a horrible experience.
posted by Old Geezer at 7:33 PM on November 9, 2011 [3 favorites]
It is not a service for those who are struggling to prolong life at all costs, but is a tremendous comfort for those who have come to recognize that a transition to the end need not be a horrible experience.
posted by Old Geezer at 7:33 PM on November 9, 2011 [3 favorites]
Seconding Old Geezer vis hospice. I also recall hearing that, statistically, people usually sign-up for hospice very close to the end, which is somewhat sad considering the palliative services are meant to support and comfort the person.
posted by forthright at 7:51 PM on November 9, 2011
posted by forthright at 7:51 PM on November 9, 2011
Note: I am not your doctor, this is not medical advice.
The first thing, of course, is what your mother wants. What does she want? Would she be willing to go to a nursing home or does she want to stay at home? What interventions will she accept?
Has anyone looked into a palliative care or hospice program? She would certainly be eligible for the former and likely for the latter given her diagnosis and recent problems. The folks at those programs are superb at having difficult conversations with patients and families about their ability to cope with advancing health problems, and the social workers know the details of insurance coverage like the backs of their hands. Home hospice is a Medicare benefits, so she would be able to stay at home with visiting nurse services several times a week.
Regarding her eligibility for Medicaid, you really need to consult with someone with experience in your state, like an elder care attorney or a social worker who specializes in these issues. There is so much variability state to state that it's really hard to say anything with much authority, especially when we're talking about the irrevocable expenditure of someone's life savings.
posted by The Elusive Architeuthis at 8:00 PM on November 9, 2011
The first thing, of course, is what your mother wants. What does she want? Would she be willing to go to a nursing home or does she want to stay at home? What interventions will she accept?
Has anyone looked into a palliative care or hospice program? She would certainly be eligible for the former and likely for the latter given her diagnosis and recent problems. The folks at those programs are superb at having difficult conversations with patients and families about their ability to cope with advancing health problems, and the social workers know the details of insurance coverage like the backs of their hands. Home hospice is a Medicare benefits, so she would be able to stay at home with visiting nurse services several times a week.
Regarding her eligibility for Medicaid, you really need to consult with someone with experience in your state, like an elder care attorney or a social worker who specializes in these issues. There is so much variability state to state that it's really hard to say anything with much authority, especially when we're talking about the irrevocable expenditure of someone's life savings.
posted by The Elusive Architeuthis at 8:00 PM on November 9, 2011
You need an elder law attorney. Look at the Illinois Bar Association referral service or attorney listing page. If you don't find any attorneys that list that specialty, call a few estate and family law attorneys, and they should be able to refer you to someone. Your social worker actually may know a few.
Typically, elder law attorneys are familiar with Medicaid and Medicare, end of life issues, powers of attorney, estate issues, and how the domestic relations law in Illinois affect all of the above. You are looking at one stop shopping, elder law attorneys tend to be remarkable human beings, so you will not regret buying a few hours of time.
TINLA, but if your father is this off track, you may want to ask about getting your mother a Guardian ad Litem. Ask an elder law attorney.
Is she able to make and express her decisions? Does she know what kind of care she needs? If so, your father's wishes mean exactly bupkus.
You will get through this. You will help your mother get through this.
posted by freshwater at 8:28 PM on November 9, 2011
Typically, elder law attorneys are familiar with Medicaid and Medicare, end of life issues, powers of attorney, estate issues, and how the domestic relations law in Illinois affect all of the above. You are looking at one stop shopping, elder law attorneys tend to be remarkable human beings, so you will not regret buying a few hours of time.
TINLA, but if your father is this off track, you may want to ask about getting your mother a Guardian ad Litem. Ask an elder law attorney.
Is she able to make and express her decisions? Does she know what kind of care she needs? If so, your father's wishes mean exactly bupkus.
You will get through this. You will help your mother get through this.
posted by freshwater at 8:28 PM on November 9, 2011
I can't help with the legal stuff, beyond suggesting that maybe someone else (a lawyer? you?) could be named her legal guardian.
Unfortunately I totally understand what's going on with your father: my own father had pretty much the same reactions to my mother's long downhill slide. Your father is probably a pretty old-fashioned guy; when he married her, he promised 'in sickness and in health, until death do they part' --- he PROMISED to be there for her in good times and bad, and he's keeping that promise to the woman he loves. To him, doing less would be failing his wife when she needs him most. And, too, there's his pride in having been the family provider.
Getting old is a series of small indignities; it's bad enough to know you can no longer do something you easily did 30-40 years ago; being TOLD that you can't do something --- and worse, in a way: being told BY YOUR CHILDREN --- that hurts far more.
The problem with accepting a home health aide is tied in with all of this, the 'failure' to keep his promise to care for her & being forced to accept assistance. And if they have had someone in before? Perhaps it was an awful experience for both of them: for example, one aide my mother had was both very brusque with her --- NO bedside manner at all! --- and extremely intrusive into their finances (she demanded he hand over his checkbook so she could "check" his bookkeeping!).
posted by easily confused at 2:16 AM on November 10, 2011
Unfortunately I totally understand what's going on with your father: my own father had pretty much the same reactions to my mother's long downhill slide. Your father is probably a pretty old-fashioned guy; when he married her, he promised 'in sickness and in health, until death do they part' --- he PROMISED to be there for her in good times and bad, and he's keeping that promise to the woman he loves. To him, doing less would be failing his wife when she needs him most. And, too, there's his pride in having been the family provider.
Getting old is a series of small indignities; it's bad enough to know you can no longer do something you easily did 30-40 years ago; being TOLD that you can't do something --- and worse, in a way: being told BY YOUR CHILDREN --- that hurts far more.
The problem with accepting a home health aide is tied in with all of this, the 'failure' to keep his promise to care for her & being forced to accept assistance. And if they have had someone in before? Perhaps it was an awful experience for both of them: for example, one aide my mother had was both very brusque with her --- NO bedside manner at all! --- and extremely intrusive into their finances (she demanded he hand over his checkbook so she could "check" his bookkeeping!).
posted by easily confused at 2:16 AM on November 10, 2011
1. Hospice. They know how to deal with all this. Make a list of all your questions and issues, and show it to them. For anything they can't deal with themselves, they can point you in the right direction.
2. Lawyer specializing in elder law. Even just a half hour consultation will do wonders to clarify the financial situation (though you may decide that you need more help than this).
3. Medicare will provide some coverage for home care. If you're lucky, it will be great care, but it won't be enough. Even if you move in to help your parents, and have a nurse and home health aide come every day, you'll probably need to hire some additional help, maybe for overnight. Taking care of someone this ill is very hard work, round the clock. So,
4. Find ways to take care of yourself.
Best of luck to you - the year ahead won't be easy, but there's lots of help available.
posted by Corvid at 1:51 PM on November 10, 2011
2. Lawyer specializing in elder law. Even just a half hour consultation will do wonders to clarify the financial situation (though you may decide that you need more help than this).
3. Medicare will provide some coverage for home care. If you're lucky, it will be great care, but it won't be enough. Even if you move in to help your parents, and have a nurse and home health aide come every day, you'll probably need to hire some additional help, maybe for overnight. Taking care of someone this ill is very hard work, round the clock. So,
4. Find ways to take care of yourself.
Best of luck to you - the year ahead won't be easy, but there's lots of help available.
posted by Corvid at 1:51 PM on November 10, 2011
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I'm not at all versed on any of the legalities, but if you're concerned with the division of your mother's assets, she should have a will and should specify that she wants her children to be considered. There's no doubt you're going to need a lawyer. There are lawyers for Elder law (some listed here) but they're much rarer than family law practitioners. Your comment on the $10000 owing on the car struck me. I presume you're in a community property state, in which case, the car, and the debt, are half his at this juncture. He will inherit her half of the car. There may be other debts that would be better to look at if things are being paid prior to her death. I would worry about all her assets first going to support her through her illness and to pay for her funeral and burial/cremation, then the rest will go to settle debts and be divided in her will. That seems to be the fairest as far as doing right by everyone and avoiding contention.
Hopefully many of your questions will be answered by other, more knowledgeable people here.
posted by BlueHorse at 6:25 PM on November 9, 2011 [1 favorite]