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.
posted by slyboots421 to health & fitness (14 answers total) 1 user marked this as a favorite
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.