Heart and/or Mind
December 10th, 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.
December 10th, 2006 at 11:35 pm
I close my eyes all the time and let Things Work Themselves Out. It works.
I’m thinking, too, that your mother’s “revival” (I use that word with all the hesitation of a caregiver to an Ancient One) is simply due to not being left alone, anymore, at all. I have a feeling that leaving a Demented One alone is what causes the anxiety, that causes the devastating memory blips and the social problems with caregivers, etc. I’m assuming that she will not be left alone in a facility, either. Thus, if my assumption is correct, either place would be good for her. Now, what you need to decide is what will be best for both you and her.
December 11th, 2006 at 6:42 am
This roller coaster you describe is exactly why early on it occurred to me that no matter how bad things seemed they are not that bad and, on the other hand, no matter how good things seem they are not that good. For some reason the symmetry is sort of comforting to me.
December 11th, 2006 at 3:48 pm
Deb - I felt this so often myself, when my mother can somehow magically pull herself together for strangers and “perform” her old self. You almost get tricked into not trusting yourself. And I agree with Gail about what being alone can do to someone with AD - my mom was only alone one day this week, and it immediately ramped up her paranoia.
December 11th, 2006 at 4:13 pm
I felt the same way at my Mom’s last doctor’s appointment. I thought to myself that this couldn’t possibly be the same person as an hour before. She presented herself to the doctor as almost coherent and answered his questions with some clarity that she hadn’t shown to me in months. It was astonishing. As Paula said, it was as if she magically pulled herself together for the doctor.
Every day is so different with AD. For both of us.
December 11th, 2006 at 5:34 pm
I used to be amazed at my Grandmother’s sudden clarity at times, as if she would “snap back” for a moment or two, and then I would wonder “will I ever see it again?” It is extremely wierd, and almost more disturbing than other symptoms. Even now, her clear moments are boiled down to a non-generated “yes” or “no” response. If I can get a whole sentance I’m grateful.
December 11th, 2006 at 8:29 pm
Deb, at school and in our work lives we are taught to analyze situations in a rational way, then take the appropriate action. There’s all sorts of methods for thinking this way - Pareto Analysis, Decision Trees, Scenario Planning, blah, blah, blah. None of these methods work in what you call “Alzheimer’s Land,” partly because situations change daily.
So there’s probably no right or wrong decision about assisted living, just a myriad of possibilities stemming from any course of action. This is really hard for those of us who want to do everything right. It’s a multiple choice test on which you’ll never score an A.
December 17th, 2006 at 5:48 pm
Caretaking is a very difficult thing….especially difficult in our situations because sometimes we just need the comfort of our mothers - and now we’re in the mothering roles.