Alzheimer's disease · Behavior · Burnout · Caregiver · Family · Memories

Heart and/or mind / December 10, 2006

Two days ago my cousin telephoned, and my mother answered. I listened to her side of their conversation and thought, “Have I been dreaming? Is she really sick?” She handed the phone to me at one point. “She sounds great,” my cousin said to me.

Is this the woman I visited in the nursing home a little over a month ago? The one who was acting out, who wanted to kill herself, who claimed she’d been raped? Oh, we still see the disconnects (she kept referring to my sister as “he” earlier today), but I can deal with that. I can deal with her thinking that I’m her sister, or expecting my father to come home for dinner, because those disconnects don’t alter my mother’s personality, her “self.” She remains essentially herself, only caught in a time warp or subject to a misidentification. If I say to her, “Daddy won’t be here, tonight,” she usually takes it in stride, even though she’ll probably ask for him again tomorrow.

I’m not trying to fool myself, here. I’ve seen enough of her during those other times, when her body seems to be inhabited by another self. When she’s so agitated by God-knows-what that she can’t get a grip. When she’s so angry at me–only the “me” she sees is a stranger. I can tell by her eyes. I saw it in the hospital and again in the nursing home.

But she’s been remarkably like the Mom I’ve known all my life since she came home from the nursing home. Despite all the reading I’ve done, all the learning about Alzheimer’s Disease, I catch myself at times like this wondering… Am I making a mistake, moving her to assisted living? What if THAT makes her worse? Even though I’ve actually experienced those spells when I’ve been a stranger in her eyes, they now seem like dreams to me.

I know that this is what happens. One step forward, two steps back. Another step forward, leaving the caregiver in an emotional and practical muddle. How awful is it to find yourself worrying because your mother seems to be better than usual? Should I be listening more to my heart, and not to my head?

This facet of caregiving just can’t be measured: the role of the familial bond, for both the caregiver and her charge. I couldn’t do this, day in and day out, for a stranger (unlike many professional caregivers, God bless them)–I get my motivation from my lifelong relationship with my mother. When the going gets tough I try to remember specific things she has done for me over the years–I step back a bit from the present moment and try to put it in its proper perspective as just one of many, many moments that comprise our relationship. Doing that requires a rational decision–I withdraw from the emotion of the present into something I’ve created, an informed mindset I’m determined to maintain. I may be close to tears but I can usually hear the reasonable voice within me saying: “Now, now, that’s the Alzheimer’s speaking–take it with a grain of salt.”

I think my point is that the swinging back and forth from head to heart, and back again, is tough. Knowing at any given moment whether to listen to reason or to emotion is difficult–usually such decisions are nicely spaced throughout our lives. But here in Alzheimer’s Land they are not. When you are caring for a parent, there’s a constant conversation going on between your dispassionate and your passionate selves. It’s nice to have dialogue but sometimes I have to tune it out. Sometimes I have to rest my head against The Divine and say, “Okay, you take care of things for awhile. I just want to close my eyes…”

I’m going to do that right now.

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