Alzheimer's disease · Assisted living · Caregiver · Caregiving · Death · Disclosure

Assisted living, part 3 / September 26, 2006

The nurse from the assisted living facility visited us last Tuesday to evaluate my mother’s suitability for this type of living. I fretted deeply about this, despite trying to calm myself down by re-examining all my escape hatches (”This doesn’t mean she’ll have to move TOMORROW”, etc.). I eventually realized that my primary worry was in presenting my mother with this evidence–the presence of the nurse–that I had been actively making plans behind her back, without her knowledge. This has bothered me A GREAT DEAL, despite my knowing that she is no longer able to consider the big picture, that much of the responsibility is now rightly mine.

I’m also discovering a strange angle to my situation as my mother’s caregiver: that it’s easier for me to accept the disease than it is to accept the vagaries of the healthcare system. And by “healthcare system” I mean not only the bean-counters and the policy analysts, but the vacuums that are created by allowing our practice to be shaped by the market, and not by ideology. I’m certainly grieving for what my mother is losing, but–maybe this is my Catholic upbringing–I know that we all must die and I don’t have any inclination to rage against the heavens about that. But I DO rage when I–the lonely caregiver–keep hearing about all the services that are out there for me, waiting to be tapped. All I have to do is find and coordinate them!! In my spare time!

Sure, I’m capable of looking at websites and in telephone books, and sending out email and dialing telephones. I can write checks and use a debit card, too! But it just isn’t that easy, once you start discovering that you must either be very poor or very rich to take full advantage of this system. Oh, maybe I’m cranky because I’ve only just come back from the pharmacy, unable for the second time to fill a prescription my mother needs because her nurse practitioner called it in and changed the dosage by 5 mgs., so my mother’s Part D insurance company will not cover the new dosage unless the NP calls them directly. This is just a microcosm of what bureaucratic headaches are involved in dealing with the system and this is what I rage against, especially when I have to deal with it at the same time as I’m filling out forms for the AL facility, and amassing a sheaf of documents for the VA. Plus having to go into work late for the nth time because my mother wakes up especially agitated on a particular morning.

But back to the nurse and my disclosure-anxiety. I told my mother beforehand that a nurse would be coming to the house to talk to her about her health. My mother was surprisingly sanguine about it. “Okay,” she said, and let it drop. I did not tell her where the nurse was coming from, until she was seated opposite my mother on the sofa.

The evaluation was very low-keyed and personal. At first I kept glancing nervously at the name-tag the RN was wearing, which bore the name of the facility. I expected her to administer the Mini-Mental Status Exam, or something like it, but she was most concerned with whether my mother is able to dress and “toilet” herself. At one point she alluded to information she had learned from my mother’s doctor, so I assume that he had covered the specifics of her illness with the nurse. I finally found the courage to tell my mother where the nurse was from, and how I had arranged to have her come and visit because I would like to move back to my house but do not want to leave my mother alone.

I had said this to her before, but not as pointedly and not with a witness present. My mother looked a bit shocked–despite her condition she now knew what this visitor meant. I noticed that she seemed to find it harder to look the RN in the eye after that–as the nurse described the amenities of the place, my mother wore a flat, evasive expression. The moment the nurse left, my mother turned to me with an inscrutable look and merely said, “You.” I felt terrible.

We didn’t talk about it again that night. She was very quiet as we watched the news and then she decided to go to bed extra early, before the Mass began. I felt at once awful and a bit relieved that she now knew what I had been doing. I held off mentioning it for several days (mostly because I ended up with my usual post-traumatic migraine a couple of days later, my routine roundtrip through purgatory after a stressful event). But on Sunday we took a drive out to apple country, where we bought a pumpkin and a bag of Cortlands. On the way back I stopped at my house to water my plants, and my mother, as usual, remarked on what a pretty house it is.

“I’d really like to move back to it,” I said.

“Right now?”

“Yes, but I don’t want to leave you alone.”

My mother was quiet a few moments and then said something sphinx-like: “I don’t have any aspersions about that place.”

I asked her if she meant the AL facility and she said yes, and I was somewhat surprised that she had it so readily on her mind. I think I was relieved that she DID have it on her mind because at least now it’s something she can be aware of, maybe even think about? I’m being optimistic here–I’ve been thinking about what she could have meant by “aspersions”: “aversions”? “aspirations”? I’ve got to think about this.

It’s a tough passage for me. I have to be careful that I don’t focus too much on grappling with the system and lose sight of what I believe is best for my mother. One day at a time, as they say.

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