Alzheimer's disease · Behavior · Burnout · Caregiving · Language

Catherine Wheel / October 6, 2006

Today reminded me of why taking care of someone with Alzheimer’s Disease becomes unbearable. In short: there is no smooth trajectory downward–you wake up each morning with little expectation of what the day will bring. Things get horrible, then they suddenly improve for awhile. Then they get worse for a day, then you coast along for awhile very manageably. This emotional rollercoaster is much harder to live with than I expected.

I had an appointment with our lawyer today, so I took the entire day off. Eva was working a long shift, so I planned on spending time at my house in the morning and then heading off to the lawyer’s office.

I’m beginning to realize that the tenor of my mother’s days is often set by me or my sister. Sometimes I do something with the expectation of relieving her anxiety, only to find my act provoking new and different behaviors. So today I expected that my staying with my mother until Eva arrived would be reassuring, since she seems to be unusually fraught at being left alone. Before I got up I heard her go into the bathroom and then return to bed. When I brought her pills to her shortly afterwards she took them from me and attempted to take them without lifting her head off the pillow. When I suggested that she sit up, she told me that she couldn’t, because her leg was in great pain. “I can’t even walk anymore,” she moaned.

This isn’t the first time I’ve heard her up and about–sans cane–only to moan, “I can’t walk” minutes later. I think I’m realizing not so much that she’s “faking”, but that her legs are what we English Lit majors call “the objective correlative” to her mental state. As the legs go, so goes the day.

We have had her legs MRI’d and ultrasounded and xrayed, and the doctor’s conclusion was that there is most likely arthritis at play–an idea my mother sometimes embraces and other times denounces. I mention this because I don’t want to seem indifferent to her pain. I’m now at a point where I must be very selective about my battles.

Today I wondered whether my staying home hadn’t set my mother on a slightly different course from her usual morning confusion and anxiety–on a somewhat more self-conscious tangent. She eventually got up and wandered out to the kitchen–again, without her cane–then sat in the living room for awhile. I delivered my gentle sermon about how staying in bed for long spells might contribute to her leg problems, and as soon as I turned my back–she was back in bed.

Eva arrived shortly afterwards. Once again, my mother got up and shuffled into the living room. “I don’t think I’ll go today,” she said weakly.

Ahhh. I’d forgotten that she wakes up every morning believing that she has to be “at work”, and so I responded, “You don’t have to go today,” which perked her up. “Can Eva stay?” she asked. “Sure,” I said, feeling like the good fairy.

By the time I got to my house I was both distracted and tired. Instead of doing the odd jobs I’d planned, I watched “Walk the Line” on HBO, which took me out of my world for a couple of hours. Look at Johnny Cash’s problems–and I think I have it rough? When I finally left my house I was humming “Ring of Fire.”

My visit with the lawyer was a good one. She backed up a couple of decisions I’d made and offered me a couple of reassuring financial alternatives. I was getting tired of people giving me advice, or bemoaning my parents’ failure to plan realistically. My father did what he thought sound, back in the seventies, and didn’t revisit his plans. As I talk to others my age, I realize that this situation is not uncommon. My father’s generation–who were coming of age during the New Deal–expected that government would always work the way it did under Roosevelt and take care of its citizens. How sad that many of this generation are now aged and frail at a time when the federal government is handing off such responsibility to the states like a hot potato. When “trickle down” economics is considered the 11th commandment.

But back to my day. When I left the lawyer’s office, I turned my cell phone on to find that I had two messages: one from Eva, asking me to come home, my mother was having shortness of breath; the other from my sister, with basically the same information. When I got home my mother was sitting on the couch with Liz, looking very wan. She said she was feeling better, but had quite a bit of trouble describing what had occurred. I tried not to interrogate her, I asked my questions slowly and simply, but all I determined was that there was no pain.

So here is where the caregiver has to remind herself that she will be the one to make any further decision. I heard myself asking my mother: “Do you want to go to the doctor?” but realized that this would go nowhere. I should have made a decision–let’s sit awhile and see how you feel–and presented it to her. I did this, eventually, but by then the seed was sown. A short time later my mother began asking me to call the doctor to ask for “the test results.” “What test results?” Liz demanded, as I clenched my teeth. My mother managed a halting account of having gone somewhere to have tests done, and they should be ready now, so would we please call?

By this time I was regretting having taken the day off in the first place. If I’d gone in at my usual time, my mother would probably have had her anxiety, which would have worn off by afternoon. I had bartered the anxiety for something else–but I don’t know what–and my mother was still having a serious problem stringing a sentence together in the evening. As we watched the Mass, she suddenly said: “They never used to do that in school, all the children… Come up to me and say, ‘It’s easter.’” I was totally bewildered and so I said, “Do they do this now?” “Oh, yes, especially little Eva.”

It hit me that she was referring to watching the Mass at noon, instead of at seven pm. Eva must be starting to suggest that they watch it early. “So now you watch it at noon?” I asked by way of testing my hunch. “Oh, yes,” she said happily.

So this was my day and thank God it’s a Friday, because I can sleep late tomorrow. I have no idea what the day will bring.

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