Alzheimer's disease · Assisted living · Behavior · Caregiver · Caregiving · Grief · Hospitals

Transition, part 2 / October 12, 2006

My mother remains hospitalized, and we now know that she has a pulmonary embolism, no doubt the result of Deep Vein Thrombosis. Another reason to keep the legs moving. The good news is that she is doing quite well–she is alert and her skin has color. She’ll probably be in for another couple of days, until she can transition from the heparin to the warfarin. Under normal circumstances this would be a relief, but of course these circumstances are not quite normal.

What I do know is that she will require two weeks of rehab in a nursing home, but I don’t know which one. I certainly have my preferences but it worries me that the case manager hasn’t gotten back to me yet on this. I’ve reviewed the state ratings and I’m so afraid that the only beds available will be in the lowest-rated homes. Another reason to consider ALL possibilities when preparing for “placement”, as they call it. I had barely considered nursing homes because my mother is so healthy. And–to be honest–I’ll confess that I have a “One Flew Over the Cuckoo’s Nest” idea of nursing homes, I am sorry to say. That’s my ignorance, I know.

And then there’s the uncertainty of her diagnosis. As I mentioned, if she gets back on her feet, and the only factor is the Alzheimer’s, she WILL NOT be eligible for nursing home care after Medicare runs out. So we’ll be back to waiting for an assisted living opening. In a nice little irony, the facility I’d waitlisted her for called me yesterday to tell me they have a bed for her this week, which I had to decline. My worry in all of this is unnecessary moving from one facility to another–and maybe back home again.

The “not knowing” creates quite an emotional strain for all of us, my mother included, even though she is not able to understand the implications. At least three times an hour during our visits she tries to get up and leave. We tell her that she was very sick and that she needs to get all the medicine into her (here we point at the IV) in order to get well. She complies, only to make the same move twenty minutes later.

One bright side is that the nurses and aides love her. One nurse in particular–who cared for her own mother throughout her AD–comes in at the beginning of her shift and gives my mother a kiss and strokes her face. The other night she washed my mother’s hair (which hasn’t been cut in awhile) and then French-braided it. All in all, the hospital staff has been beyond wonderful. My mother’s rosary beads went missing (probably wadded up with the bedding and sent to the laundry), so my sister asked the head of housekeeping for the unit to keep an eye out for them. This woman did more than that–she got the hospital chaplain (it’s a Catholic hospital) to visit my mother with a new pair. When I brought my knitting (still the Bohus sweater) with me today to pass the time, one nurse admired it and sent several others into the room to see it.

So the lesson for me here is that an institution can be one thing or another, depending upon the personal interaction between me and the staff. My sister and I have asked each staff person his or her name, and tried to chat with them. A couple who seemed a bit brusque have opened up–one nurse in particular, we learned, is caring for her own elderly mother after heart surgery, and so we’ve tried to ask after her mother’s health. Today when she came on duty she visited my mother and took her face in her hands and said, “How’s my sweetie?” I was taken aback–but in a good way.

I’m still a nervous wreck, but I’m seeing how my mother reacts to this care. My sister and I have spent at least four hours with her each day, trying to reassure her that we are still around–and while she still talks about “getting going”, she doesn’t get as agitated and upset about it as she did the first night. Actually experiencing the way my involvement might improve her care has been illuminating, and this lifts my anxiety for stretches of time.

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