You know how, in the
Harry Potter series, Hermoine is the girl who always turns to books for answers? That's me, too. When new things come up in my life, for good or bad, I tend to read as much as I can about them, and Dad's Alzheimer's is no exception. Reading about other people's experiences with the disease helps me make sense of my own, so when our library got a copy of Mary Ellen Geist's
Measures of the Heart (a book Becky and I had already talked about), I was the first to check it out. The book tells of Geist's decision to give up her job as a radio news anchor and return home to Michigan so she can help her mother take care of her dad, Woody, who has Alzheimer's. I wanted to read it desperately, not only because books are always where I turn, but words are, too. I wanted to see the Alzheimer's experience through someone's writerly eye so that I might better understand what my mom is experiencing as my dad's caregiver.
Despite the fact that I took the book home the very day it could be checked out, it took me forever to read it. Not because of any problems with the writing. It is a well-written book, absorbing and interesting. It tells the science behind the disease as well as the personal cost of caring for someone with Alzheimer's. Geist's training in radio and television news is obvious; the book reads like an episode of 20/20, moving easily between the author's personal story, medical research, social implications, and other people's experiences (other caregivers, doctors, social workers, writers). She negotiates a wide range of ideas, from helping her father shower to helping her mother pick out a care center for him. You learn exactly what is entailed in being the caregiver. "The benefits," she explains, "are that your heart expands. You find out who you are when you stop moving so fast. You retrace some of your life and try to get it right this time. You go through old photos with your mother and learn more about your family and where you came from. . . . You realize what you're made of. You provide comfort for both your parents in a way you never could before." Of course, she also discusses the troubling part of caregiving. It is an exhausting, never-ending task. I had imagined it as taking care of a child, and she describes it that way, too. Only it is, in a way, the opposite of being a parent, because rather than looking forward to new milestones being achieved, you are always looking backward: yesterday, he had this skill, and today it is gone. Geist's use of language, her way of thinking, is similar to my own, that way of looking at something that I call "writerly," fed by wanting to use words to understand something, to use your own history of reading to make sense of the world. I get that. I needed it, in fact; looking from the writerly stance at Alzheimer's makes it more bearable. It is a filter that pulls out some of what is painful.
There were plenty of times when I shook my head, agree with Geist. "Sometimes, your wonderful idea of how to help," I would have underlined if it were my own book, "doesn't work. In fact, sometimes you have to admit that the idea is more for you, to help you pretend he's the person he was before the disease took hold." When I read this, I immediately flashed back to my first reaction after hearing Dad's diagnosis: I'm going to get him to tell me everything right now. I bought him a notebook and I asked him to write something in it every day. My faith in words was this: he'll still be able to write something. He'll still have something to tell me. If he has a pen and a notebook, he'll finally tell me the thing I need to know most from him. But already, he couldn't do it. I asked him to write about his memories of his dad, and told him to type it instead. Eager to please, he tried. The result was a hodgepodge of words, a few lucid sentences, but nothing that gave me what I needed. I put myself in his shoes and imagined that, if I had Alzheimer's (far, far from the last time I have worried at just that), I would still want words. I would try to use words for as long as I could to make as much sense of it as possible. I put that need inside of him, thinking it was helping him. But I realized later: it wasn't for him. It was for me. It was my way of making myself feel like he was still there.
That's just one connection I made in this book, one shaking-my-head-in agreement moment. It was full of those connections, but it still took me months to finish. Why? Quite honestly, the marked difference in Geist's family's approach to taking care of their father. They are able to focus on what is left of Woody; they are able to be sustained by the "sort of gems" that come in the experience. In the few times I've helped with my dad, I have experienced those gems, too; they are moments of brightness, of surprise, even of laughter. Moments that you could never have had any way other than by being a caregiver to a person with Alzheimer's. For me, the gems haven't been enough. For me, there is a sort of almost-anger that builds in me whenever I am with Dad. A desperation---a surreal, complex knowledge. There he stands in front of you, looking almost like himself (Geist describes the Alzheimer's face as leonine, a word I have used in my journal, too); he's there, a physical presence. But he is not there; he's not there, a personal absence. Some other man has taken up his form, has taken away everything he used to be, and it rises up in me, the almost-anger. Go away, I want to tell the person Dad has become, let the real Dad come back.
The Geists don't seem to have any of that go away emotion. Instead, their experience seems to be based on there you are, a realization that, while it comes in smaller and smaller doses, is still enough to sustain them. I want my experience to be like that---I don't want to feel that pushing away. I want the gems to be enough for me. I even felt some envy of Geist, that her life was such that she could give up everything to take care of her dad. Maybe if I could have been more active in his care, I would have had enough of the gems to sustain me. Maybe it is only by immersion that you're able to find what you need.
I'm glad I pushed through and continued reading, though; I'm glad I finished. Near the end of the book, Geist quotes a psychologist, Carolyn McIntyre, who continues to work with families immersed in the Alzheimer's experience. Grieving for someone with Alzheimer's is a unique sort of grief; "you have to grieve the person you once knew. . . you're saying good-bye and then the person doesn't leave." That's exactly it; every time I see Dad, I say good-bye again while I also try to say hello to the other person he's become. It is complex and surreal. It doesn't make sense. McINtyre's small statement opened up a door for me and for an instant I felt like my grief was OK, simply because it is mine. That maybe I don't have to feel guilty for feeling angry, because it's not really Dad I'm angry at---it's the at the disease itself. So, even though I left the book feeling more sadness over my family's response to Dad's Alzheimer's, I also got a little bit of relief from it, too. It gave me a label to put on one part of the grief: I am saddened by the fact that I couldn't help more than I have. My life right now wouldn't allow it, and that truth means I lost out on the gems I could have had. It left me feeling like my grief is something I can own, something I can name and describe, feeling like it is normal to have the feelings I do. It is a measure of my own heart.