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In November of last year, my husband's mother ended chemo and went on hospice for metastatic breast cancer. At the time she was living in an apartment complex for low income seniors. She wasn't assisted living, but they did do apartment checks to ensure safety, and check that the residents were actually alive every day, and they had emergency pullcords in each apartment.

This complex was a good place for her as she is a hoarder and their rules kept it somewhat in check (not as in check as the apartment complex would have liked, it was a constant battle, but better than when she had free reign in her own house.)

Anyway, right after she went on hospice, my mother-in-law (MIL) told us that hospice said she was unsafe to live alone. There really needed to be someone else with her. There is not other family for my mil, my husband is her only child and there are no other relatives.

Even though we are not close (she dislikes me intensely, and her and her son have a strained reltionship which he struggles to keep cordial) and she is an incredibly difficult person (even beyond the hoarding) , my husband decided the right thing to do was have her come live with us and enable her to die at "home" as opposed to a nursing home or hospital. I understand his feeling a sense of duty to a parent, even a parent he isn't close to, so I agreed. I wouldn't want to stand in the way of such a monumental choice.

My MIL, who was actually in pretty good shape at that point (still driving, independent, etc.) told us that hospice does all the nursing etc,. she just needed a place to live and for someone to be home.

I feel foolish in saying my husband I and thought that was true.I thought I'd just add her laundry to ours and make her meals. We gave up our master bedroom so she'd have a connected bathroom and took responsibility for caring for her dog. Jeeze, we didn't even google or anything, we just assumed that at end of life, all of a patient's care is taken care of by their medical/hospice team, even if they choose to die at home.

NOW, of course, I realize we had a very, very vague understanding of hospice services and what caregiving for a dying person really entails. We really went into this pretty blind.

My husband works long, long hours and travels frequently for business. I don't work any more due to chronic migraines for which I am occasionally hospitalized. Of course, all of the caregiving falls to me, since I am here. There are no other family or friends to offer help.

I had NO IDEA what I was in for. As MIL has declined her anger at being sick has intensified.

As of right now, we just came off a stretch of Continuous Care after 4 falls in 5 days and MIL is almost, but not quite, bed bound. I have to assist her in using a bedside commode, which she bitterly despises, almost as much as she despises me. Other than that, she is now in a hospital bed all the time.

I am being taught all sorts of nursing techniques, including how to care for the bed sore she has developed in the cleft of her buttocks. You can imagine what she thinks about me do *that*. *I* am still in shock I'm doing *that*, I was so unprepared for all this.

We've had dry runs at doing a diaper change for when she becomes bedridden, but she is so angry that she makes it difficult to learn how to do it properly.

I *totally* understand her anger at all of this, and yet here I am, tasked by hospice to do this. They asked her if she would rather go to a nursing home (though I don't know how that gets paid for) and she said, "no." But she also said she doesn't want me to care for her. So, it is a lose-lose.

Now that she can't use the bedside commode without assistance, I can't get any relief time away. My husband has been out of town for a week, but even when he comes back, it obviously isn't appropriate to have her son do those personal care tasks.

I asked hospice today if the health aide could stay for maybe an hour when she comes to do the bed bath so I could maybe take a walk, but they said no. For some reason we can't get a hospice volunteer either? I didn't understand her reasons, it had something to do with her "orders".

I can't believe that I am the person who this all falls on. The person she hates. I just really had no idea this was what it would look like.

I don't even know what my question is, I'm so tired and horrified. I'm so sad for her and for us and I guess I just feel lost in the process.

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I don't think she has actual dementia, however, hospice has said breast cancer often goes to the brain at the end, so it is difficult to "reason" with her about the reality of the situation, since she isn't necessarily responding logically. She's often not all the way lucid, and when she is lucid, she's lashing out -- which I guess isn't uncommon when you're dying.

Thanks for the pants suggestion Carezips, I'll check that out.
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Thanks guys for your suggestions.

I should be clear that "Continuous Care" was when hospice puts a nurse in the room 24/7 due to sudden symptom change being out of control (in this case it was the transition from being a person who can walk with a walker and a person who can no longer walk with a walker without falling). She was never in a facility.

Also, my husband isn't trying to avoid helping, he's actually working hard at his job. I used to work for the same company he does, I know what he's doing. He's working hard to keep the roof over our head and food on the table. Just didn't want it to seem like he's trying to avoid helping -- he's not. He's the guy who has to walk out the door and earn our living. We considered using FMLA time as this has gotten tougher, but when you use that, it can have serious repercussions (even though it isn't supposed to, you know?).

Last week, they told her she had maybe a week left, but they are backing off of that now. But I think it is weeks to low end of months at the max. She has declined so rapidly, I can't imagine longer than that. At one point they thought she was entering her "dying phase" but I didn't think so.

She has no money, but I'm looking right now at whether my husband and I can afford to pay for a private aid a couple hours a week to give me a break. That's a good idea (man, this is expensive!), thanks txcamper!

I really don't want my husband to do her personal care, I just think that it is too awful for her to withstand. It isn't him I'm worried about, he'd do it, it is her personal dignity I'm trying to preserve as much as possible. Maybe I'm looking at this the wrong way? I don't know, but I'd like to not do that to her.
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First, I am so sorry for your situation. I concur with the two answers above. While no expert, I suspect that if she has no resources in which to pay for a room in a fully-skilled nursing home, she might qualify for Medicaid - that is if all her assets for the past ? number of years no longer exist. If she has some assets, then she might not qualify, and I believe the authorities will go back to check a number of years…only a quality elder care attorney would be able to give you good info. You might consider trying to hire an elder care attorney or their assistant for one hour's of time will keep your expenses down and give you good information in that one hour. You might consider one other resource - a tangible one - a pair of pants (low cost) called CareZips® which reduce skin shears (like a bed sore) given the fabric; their construction helps to change a brief (diaper) more easily for both the wearer and the caregiver. My mention isn't product-promotion - just trying to help you with a resource. Google them, and you'll see how they work.
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First, I am so sorry for your situation. I concur with the two answers above. While no expert, I suspect that if she has no resources in which to pay for a room in a fully-skilled nursing home, she might qualify for Medicaid - that is if all her assets for the past ? number of years no longer exist. If she has some assets, then she might not qualify, and I believe the authorities will go back to check a number of years…only a quality elder care attorney would be able to give you good info. You might consider trying to hire an elder care attorney or their assistant for one hour's of time will keep your expenses down and give you good information in that one hour. You might consider one other resource - a tangible one - a pair of pants (low cost) called CareZips® which reduce skin shears (like a bed sore) given the fabric; their construction helps to change a brief (diaper) more easily for both the wearer and the caregiver. My mention isn't product-promotion - just trying to help you with a resource. Google them, and you'll see how they work.
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Your husband was very generous, and of course he sees this all as "women's work" while he gallivants across the country. Stand up for your own life, Gaah. She refuses your care and won't move tells me she has dementia. Sonny boy needs to get Guardianship and move her back to Continuous Care before she kills you. 30% of caregivers die before their patients; you are at risk.
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If she has any money at all, use it to hire a home health aid for a couple of hours a few days a week and get out of the house. It will be money well spend, believe me.
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Gaaaaah, since it was your husband's decision to have his Mother live at home with you both, he has to take equal responsibility in his Mother's care, yes bedside commode and all. He can no longer hide under the guise of being away for work, that's too easy of an out. When he is home, he needs to help, exhausted or not. It's like going into a brand new job where you have had zero training.

Since Mom-in-law refuses to transfer to a 24-hour care facility and she doesn't like have you be her caregiver, ask her point blank for her suggestions. What does she wish to have done? If you hear something that you cannot do, just say "sorry, I can't possibly do that".

I understand how devastating breast cancer can be, it's a horrible disease, it changes your whole life. Been there, done that, have the pink t-shirt. I know I wanted to be around happy people. If it gets to that point, give me a continuing care facility where I can be around people of my own generation, where I would have so many things in common.... and enjoy meals in a common dining room... make new best friends, etc.
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Oh, goodness. This is a horrible situation for you. Is there any prognosis for your MIL, or does there seem to be no light at the end of the tunnel yet?
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