I was so clueless, but now I'm in the thick of it. It's soul crushing.
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.