My mother lives in assisted living, and a week ago she could use her walker to go to meals, with some guidance if she lost her way. She has had a couple of falls over the past 6 months, but she has always been very independent. She has a moment or two each day where she can say an entire sentence, and at those times I can see her personality again. She will tell me that when she gets to her right mind, she will help me around the house. At this point she is bedridden, and I am unable to take care of her at my home because I am disabled. She created an advanced directive, which includes her desire for no feeding tubes if her death is eminent. She often refuses to eat by clinching her teeth, and I will not force her, but I do try to tempt her with sweet, soft foods that I know she likes. She has been in the hospital for a week, while they poke and prod but find no new co-morbidities . She has diabetes which was controlled by diet in the past, but with her not eating, that management has become very difficult, she screams when they check her blood sugar, or when anyone touches her at all, to help with repositioning, or with bowel or urinary incontinence. Her doctor at the hospital has indicated that discharging her to rehabilitation care would not be a good option, and that he believes that hospice would be the best option. Her assisted living facility does have memory care, but they have no bed available at this time, and the facility is telling me that she must be "assisted living capable" in order to return to her apartment. What is confusing is that when we selected that facility near my home, they told us that they were hospice friendly. What I don't understand is how can they be hospice friendly when they require that you must not need hospice in order to return from the hospital to your apartment? Hospice has said that they will take care of mother's needs, in that apartment, so this is all quite confusing to me. With dementia there is no crystal ball showing life expectancy, however mother refuses to let anyone touch her, she say "no, no, no" constantly in the hospital as she is not used to being poked and prodded constantly. She wants to be left alone, made it clear years ago for no feeding tube, and that she wants a natural death. I am just not sure how to give her what she has requested with dignity and the resources that are available to us. So at this point mother is in what she called "a bad hotel" (the hospital) and I do not know how to give her a peaceful, comfortable place to be at this point. She would need 24 x 7 care outside of the hospital in order to prevent infection and such.
It sounds as though she needs to be in skilled nursing with hospice.
Does she have the funds to private pay, or does she have Medicaid? The hospice social worker and the hospital discharge planner should work on finding an appropriate bed.
So I'm wondering if no feeding tubes is just one of her stated wishes, do you know what the others are? Have you or her doctors read the document? Why is she in the hospital being "poked and prodded", which seems like it may be what she was trying to avoid? Or is it to determine if she is eminently dying (which can be said about every human)? Not trying to be difficult during this distressing time for you, just want to clarify whether her wishes are actually known and clear to all involved.
However, Medicare will only pay for one week of her being there, and if she's not passed in that one week time frame, you will then have the option of keeping her there and having her pay out of pocket for her stay.
Hospice homes are quite beautiful and peaceful, and will be like a really nice hotel, instead of the "bad" one she's in now.
That might be worth looking into, especially since it does sound like she's gone down hill recently. And not wanting to eat can be a sign that the end is near, along with pain when being touched.
I wish you and your mom the very best.