Hospice care - Medicare coverage for room and board?
August 16, 2013 10:10 AM   Subscribe

I am hoping that someone will be able to point me in the direction of any programs that cover room and board in an inpatient hospice care facility in Michigan. The patient is my boyfriend's mother, who has refused chemo and is ready to call hospice to make her remaining time comfortable. She was diagnosed with Stage IV colon cancer in May and has just been given the prognosis of ~3 months.

The caveat to this increasingly complication question is that she is a 54-year-old woman (I'll call her T) with very minimal possessions, no job, no private insurance, no savings, who has been living in a basement apartment on a month-to-month lease. Her (now ex-) boyfriend was paying the rent since she quit her job after her diagnosis. T seems to be more concerned with getting rid of his "memory" and not having to see him ever again than she is anything else, including her final months of life, and wants to move in with my boyfriend and me until it gets to be "the end" and then she wants to go into hospice. (I feel about 70% certain that it's more to "escape" the boyfriend's memory than it is anything to do with us.)

My boyfriend and I have been together 3.5 years and bought a house in December. The house is in my name and we wouldn't have it without my credit/freakish organization. I can't help but feel quite used when his aunt (T's sister) decides that I need to "take the good with the bad" and deal with the fact that T wants to die in our house. That we just moved into. I don't mean to pull the "this is my house" card but... it is. No one considers me part of the decision making process but they do seem to think that I should just sit back and accept all of these decisions being made for me and my house.

My concerns are about 15 fold, and here are just some:

-We have no relationship with T. She was an absent mother to my boyfriend and we have spent more time with her since her diagnosis (and just BECAUSE of her diganosis) than ever before.
-She had surgery at the end of May to remove the tumor in her colon, and stayed with us for a month to recover. I don't think anyone is quite grasping that coming to live her last months at our house is the EXACT opposite of that scenario, and this is not "staying here until she is back on her feet."
-When she stayed with us at that time, she complained to a family member about me, our house, our relationship constantly. Then put on a sweet face to thank me for cooking her dinner. My boyfriend was very mad at her ("We open our home to her and THIS is what we get") and I don't think he should feel those ways about her at the end of her life. If she's there with us those same feelings will arise because I bet her behavior will be the same.
-She was supposed to start chemo a couple weeks after surgery. She decided she didn't want to do chemo until her colostomy bag was removed (this was an ileostomy, which is only a temporary bag situation) but since she wasn't concerned with getting insurance or COBRA or Medicare (and more concerned with her boyfriend driving her car around), two months have lapsed and she never started the chemo. The cancer has spread even faster to her liver and lungs (where it was initially discovered as well) and now doctors have told her that they can't say with confidence that chemo would do anything at this point.
-She constantly lies. From kidney failure to saying that her boyfriend stole her car when it's sitting right outside the apartment they live in - I can't trust her. I don't even know if the 3 months prognosis is actually what was told to her because she makes things up constantly. No one has spoken to her doctor (my boyfriend is at the hospital today, where she's been all week, and hoping to corner her doctor for some actual information).
-She has been in and out of the hospital almost every other day for the past 6 weeks. She obviously needs more pain management and help than we can give her.

Long story short, I do not want T to move into our house and plan to die there in a few months. I know it sounds horrible to say this, but this is a LOT for anyone, any spouse, parent, sibling... to ask/demand. "What I want is to stay with you." And die with you. And scar you. And haunt you with my memory every single time you walk into the house. It has inevitably been thrown back in my face by my boyfriend, "What if this was your mom?" Which I have replied, 100% honestly and accurately, that my mother would never do this. She would NEVER demand that she die in my house, and rely on me to take care of her in this way. It's not fair to draw the comparison, but he kind of left me no choice.

He and I were on the same page about all of this yesterday, then he had a 2-hour phone conversation with his aunt from which he hung up in a whole other emotional state.

This is an entirely other issue that I'm trying to deal with separately, but I'm trying to come to "family meetings" (the ones I'm included in on, anyway, which so far have been zip, even though I'm considered part of the family when it's time for her to be taken care of and every other person in the family is slamming their doors) with information. I'm the only person in this situation who seems to understand what an enormous burden this is for my boyfriend, and for me - emotional, physical, and otherwise. NO ONE seems to get it. And they're making him/us feel selfish and terrible for wanting her to be in an inpatient hospice facility.

We can't give her the care that she needs. We both work full-time, long hours, and each work about 30 minutes away (at least) from our house. She'll be alone for 12 hours a day. How is that beneficial? We do not have any medical training or inclination and cannot do right by her. I also don't think it's fair that everyone else in her family gets to have the "hospice experience" of enjoying their time with her when they come to visit on weekends... they can stare at her dying in our guest room, spend quality time with her, and leave feeling good about themselves, while it's up to my boyfriend and I to give her care.

I have been so upset that I'm sure this post makes no sense. I don't even know how to get out from between this rock and hard place. I know that despite her flaws, T is my boyfriend's mother. You only get one. He's obviously having a hard time with losing her. I just don't think it's fair that he be burdened with taking care of her when he should be treasuring the time they have left.

Also to note - he has a brother and sister-in-law who live down the street from us, but they have children and don't have the room. The aunt also lives about 15 minutes from us. Both of T's parents are still alive and well in Florida and calling the shots, decreeing that she stay with us - without actually stepping up and doing ANYTHING themselves.

I have located several hospice organizations near us and know that she qualifies for the care, but I need to find out if we can get any sort of financial aid for her room and board. No one has the thousands of dollars/month that room and board apparently costs, and she's not in a nursing home. Nor does she have any private insurance whatsoever. At the end of this month she likely won't even have an apartment. Does that do anything to change what Medicare will cover for hospice?

Thank you for reading this. I can only hope that I don't sound like a terrible person - just one that wants what's best for her and her care, and one that wants to protect my boyfriend from this being an even more difficult experience than it already is.
posted by slyboots421 to Health & Fitness (14 answers total)
There should be a social worker at the hospital, and they might have some information or answers that would be helpful.

Other than that, I'm so sorry you are going through this, and I would respond the same way that you are responding. hugs.
posted by needlegrrl at 10:16 AM on August 16, 2013 [2 favorites]

First off, you are not a terrible person. I'm really sorry that you're going through all of this. Second, do find a social worker that can help you navigate. It's very likely that the hospital she's visiting has resources for family in situations like this, and can at least provide you with a phone number to get started. Finally, there are lots and lots of support groups for people in your situation and your boyfriends situation. Going to one will be immensely helpful. I can't recommend it enough.
posted by stoneweaver at 10:21 AM on August 16, 2013

I will nth the call to speak with the hospital social worker.

I will also say that while I very much see your perspective -- and would almost definitely feel exactly the same way -- it might be problematic to continue to see the house as "yours", "in your name," that you only have it because of YOUR great credit, etc. I assume your boyfriend is not your boarder. The fact that the title of the house is in your name isn't really something you can throw around in an argument unless you're dissolving the relationship, in my opinion.

Quite frankly, when a family member is dying of cancer or recovering from major surgery and, in short, in terrible pain both emotional and physical, they are not held to normal standards of decency. It's a huge burden for that person to bear and being rude is sort of the tip of the iceberg as far as "stuff you should forgive and forget when someone is ill" goes. However, given the nature of the relationship you say your boyfriend has with his mom, it sounds like to him she isn't really family -- at best a close acquaintance that he happens to feel a strong biological obligation to.

It's making me edgy to not mention this, insignificant as it may be, but there are permanent ileostomies just like there are permanent colostomies. Ileostomy doesn't mean temporary.
posted by telegraph at 10:27 AM on August 16, 2013 [2 favorites]

*hugs* You are in a difficult position, and I do not think you are heartless. In particular, I think it's unfair and cruel not just to you, but to T, for the relatives - including T's own parents - to think that "helping" and "doing something" means "shuffle off all the responsibility onto Slyboots." Family members should not be self-righteous about helping out without being willing to do something. (And I can't help but feel sorry for T, as well - knowing that your own parents don't want to lift a finger to help you when you're dying of cancer has got to be devastatingly hurtful.)

I can't tell whether T's parents are completely heartless or if T has burnt the family bridges down to the ground; either way, the parents/sibling do not get to dictate to you as if you were Cinderella.

The parents and other siblings do need to step up. This is their daughter/sister, and she's dying. And you are not the family Cinderella/doormat.

Definitely talk to the hospital social worker. He or she may be able to reach out to T's parents and get them to see that they need to help, too - sometimes people will take the advice of a professional better than they will a family member. Your local Department of Aging and Adult Services might also be able to help or point you in the direction of help. If T attends church, talk to her pastor; that's another potential source of mediation. A social worker can also help get T as much Medicare and other safety-net help as she is entitled to.

Good luck - this is a tough situation to be in.
posted by Rosie M. Banks at 10:39 AM on August 16, 2013 [1 favorite]

Ileostomy doesn't mean temporary.

True, but a common protocol for colon cancer treatment is to remove the relevant portion of the colon while at the same time creating a temporary ileostomy to allow the colon to heal without having to pass waste. The ileostomy is intended to be reversed later. Having had a temporary ileo reversed as one stage of my own colon cancer treatment, I can say that the reversal surgery itself is relatively easy (I was only in the hospital for a couple of days), but getting back to normal digestion is not (it can take months, if not years). So given what sounds like T's high degree of noncompliance/instability, combined with the possibility that she may have only months to live, then the question may be moot -- what may have started as a temporary ileostomy may now be a permanent one by default.

That said: I agree that the most urgent step is to speak to a social worker at the hospital and get an idea of what Medicare options are available to her.
posted by scody at 10:40 AM on August 16, 2013 [1 favorite]

You can find a case worker here. you might have to pay a bit for a consultation but if the hospital caseworker doesn't get you anywhere, they might be able to help guide you through.
posted by dawkins_7 at 10:43 AM on August 16, 2013 [1 favorite]

This is the job of the hospital's social worker and discharge planner. Please have your boyfriend get their attention.

If you're feeling stuck, you could call up one of the local hospice programs. Talk to someone in admissions and explain your scenario: A hospice-eligible family member is being discharged from the hospital, in need of a place to stay. The hospice person will know your options.

My next answer is to have him look for nursing homes.
Is the mother Medicaid eligible? Some folks get Medicaid to pay for room and board at the nursing home while they are receiving Medicare hospice benefit. There may be a limited number of beds a certain facility will delegate as Medicaid payors, but I would definitely check into nursing homes (also called skilled nursing facilities).
posted by coolsara at 11:12 AM on August 16, 2013

I also want to mention that she was admitted to the hospital on Monday with pain (the same pain she's been complaining of since June and has been in out of the hospital for) and they performed the reversal of her ileostomy this morning. I can't wrap my head around how this is now something that had to be done, when it was cancelled in early July because she no longer had any insurance and it wasn't medically necessary since she was perfectly functional with the colostomy bag... she just hated it. It seems just as medically unnecessary now as it did then; I just can't understand why things are going the way they are. Being in the dark with the doctors, not trusting what she says, and having no contact with the social worker so far makes it really difficult to get anything straightened out. Especially because I'm not family or her daughter-in-law, I don't really know my limits.

Also, she signed Power of Attorney to her sister and her other son, my boyfriend's brother, but not my boyfriend. So we're good enough to be the "hospice home" but not part of any of the decisions or information-sharing that the others seem to be. Incredibly frustrating.

Thank you all for your advice and I will work to get in touch with her Medicare social worker. This is a great plan and I appreciate your wisdom! Can anyone tell me if the process for setting up Medicaid takes as long as Medicare did? I was going to call Hospice of Michigan or the facilities I found directly to find out about room and board coverage but it certainly makes a lot more sense for the social worker to do it.

And telegraph - I hate to even say the "it's my house" thing and hesitated to put it here. It is OUR house, we pay the same for it and he's not a renter or a boarder, you are correct. But it's really easy to kind of view my house as a person when it's all I've really got to cling to in this discussion. I don't have anyone in the mix supporting me or standing up for me and it's kind of like my life raft to think, "We wouldn't even be an option if we hadn't just bought this house." Messed up, but pretty true.

Thank you all for your support.
posted by slyboots421 at 11:30 AM on August 16, 2013

Medicaid can be applied retroactively. I'd definitely have the social worker do the application.
posted by coolsara at 11:32 AM on August 16, 2013 [1 favorite]

Also, she signed Power of Attorney to her sister and her other son, my boyfriend's brother, but not my boyfriend.

This is untenable. He'll have to be constantly chasing people down for decisions that don't have a full picture of what is going on because they aren't caring for her. The primary carer needs to be able to make the decisions. Period.
posted by jeoc at 11:35 AM on August 16, 2013 [1 favorite]

Agree with jeoc. This whole situation needs to be taken one step at a time. First, T needs to give permission for your boyfriend to have access to her medical records. Second, you all need a family meeting to air all this, lay out all the options, and figure out how to move forward. If your house is being considered as one of the options, you get a say-so. Decisions must be made with factual medical information in hand.

I am a hospice volunteer. The in-patient hospice programs are generally very, very good, but most of them come with a high price tag for what Medicaid and private insurance does not cover, so I'm not sure T will have that option for long-term care. However, most all of them DO accept a percentage of "charity" patients and cover all their care.

Taking in a dying relative is fraught with issues, it's very hard on everyone. Especially if there are already long-standing family dynamic problems. And there will come a point where T will be unable to stay at home by herself, needing 24 hour care that you are unable to give. Any plan that is agreed to now MUST include decisions about her placement when that time comes.

Do not let these people make this decision for you. You and your boyfriend together must set out to educate yourselves on her condition, her options, her needs. Only then can you all together figure out how to work it out.
posted by raisingsand at 11:46 AM on August 16, 2013 [1 favorite]

Also, she signed Power of Attorney to her sister and her other son, my boyfriend's brother, but not my boyfriend. So we're good enough to be the "hospice home" but not part of any of the decisions or information-sharing that the others seem to be. Incredibly frustrating.

Great. So she can live with one of them, since that's clearly who she trusts to make medical and legal decisions for her.
posted by stoneweaver at 12:32 PM on August 16, 2013 [1 favorite]

But it's really easy to kind of view my house as a person when it's all I've really got to cling to in this discussion. I don't have anyone in the mix supporting me or standing up for me and it's kind of like my life raft to think, "We wouldn't even be an option if we hadn't just bought this house."

For what it's worth, I think the house being "yours" is the weakest link your very strong argument. Even if T is currently in a state that she can be left alone for 8-12 hours while you and your boyfriend are at work (and even that sounds unlikely), she won't remain independent as things progress. This isn't a question of who has a spare bedroom, it's a question of who can stay home all day to be with her and provide care, and who is willing to do so. That isn't you, and it isn't your boyfriend.

The hospital social worker should be able to help you find some options. If T truly has no assets, medicaid or similar should be able to help pay for some stuff. If you refuse to take her into your home, the hospital can't just discharge T without a place to go.

I don't know if this bit will be helpful to you, but if any of those other family members are swayed by cash maybe it could be worth looking into. I've seen cases where an unemployed or underemployed family member will quickly get their necessary credentials to be a home health aide (a.k.a. patient care assistant, or many other similar names), because this allows them to be paid by medicaid for providing home care to the dying family member. I think the number of hours they can be paid for depends on the hospice physician's determination of how many hours/week or hours/day of care the person needs. Anyway, the hospice should be able to supply a hospital bed and any other needed equipment for T, so even a dining or living room could be used as her bedroom in someone else's house. If anybody else in the family would be willing to get paid a bit to look after her, an extra bedroom is not a prerequisite.

Finally, remember that YOU get to set boundaries on this. How come nobody is pushing other members of the family to take T in? Because they've made it 100% clear that they are not budging. They're all pushing you and your boyfriend to do it because they sense that they might be able to force it on you guys. If you refuse to argue, and instead simply state clearly that you will not have her staying in your house, they will eventually realize that you're not going to be bullied into doing this. The way to make them stop bullying sooner is to be really obvious and clear with your refusal.
posted by vytae at 3:27 PM on August 16, 2013 [3 favorites]

vytae, thank you. You showed me a whole new angle to this in that it's not a matter of free space but of a free schedule. I've gotten so much great advice on this today and I really appreciate it all. I have resources to check out now and feel like I'm on much stronger ground than I felt earlier. Thank you all!
posted by slyboots421 at 8:14 PM on August 16, 2013 [1 favorite]

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