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Foreword (excerpt)

by Tess Gallagher

Beyond ForgettingI had taken Mother into my home so the twenty-four-hour care could be woven more easily into my days while I underwent infusions of chemotherapy to which I commuted three hours each way weekly to Seattle. For seven months I lived with broken sleep, getting up several times a night with her. Finally, I added nighttime caregivers to the one very able daytime caregiver. If I could say what I'd do differently, I'd get more help earlier. When one of the doctors told me it would normally take seven people to do what I was doing, it made a deep impression, but I was loathe to give over my sense of entrustment in the matter of Mother's care and postponed getting help for far too long for my good and Mother's.

As things became more demanding, both for me and for Mother, my grip loosened--a blessing for both of us. Mother was able to retell her stories afresh to the new caregivers. One was a wonderful listener, while another was an expansive and dramatic talker. Mother reserved her temper and stubbornness for a third caregiver, thus sparing us!

Just as the best poetry depends on an intensity of empathy, so the best caregiving requires an ability to feel with and for the one in need. The poetry I love most makes me feel the condition of another. Descartes predicated: "I think, therefore I am." Buddhism, as I approach it, exchanges this for: "I feel, therefore I am." Likewise with the poetry I love most--it makes me feel the condition of another. It often teaches me how to leap beyond the seemingly insoluble quandaries of situations. Poems carry us to the extremes of sorrow and unexpected joy, even as we search for meaning.

We tend to think those with Alzheimer's are the beneficiaries of our beneficence and mercies. But rather, in the wild unknowns they suffer, those with Alzheimer's draw from us heart's meat.

In my own case, I almost forgot I was fighting cancer, so focused was my caring for my mother. At the same time, she gave me something strong for which to live. I could be assured every day that I had much to give and a person I loved to whom to give it. Now, in her absence, the fullness of her presence shines anew. What for others was simply daily, for us took on the cast of the miraculous. How was it that even her sleep could inform my house with her exact presence? How could brushing her waist-length white hair, then braiding it as she had braided mine as a child, bring such a current of joy? One day we sat in sunshine on the back deck near the scent of lilies, as they unlocked her exclamation: "They smell so beautiful, they're shouting!"

When none of the medicines to stall off memory loss worked, the will to be with my mother in the best possible way could still be refreshed in how we went forward. As with so many things, attitude and the resolve not to cave in to the clichés of the disease, even its more ruthless manifestations, gave me something I could never have achieved any other way--an alchemy of spirit--by which the bond of mother-to-daughter could bring forth a birthing, moment to moment, in which memory was not queen. Rather there was the murmur of unspeakable kindness passing as a gift with no giver--something that seemingly has little to do with identity or history. We let each other need each other, the blessing of that between two women who happened to be related.

"You're the mommy now," she said to me, with an impish smile one day. And so I was. And so I am. Meaning she had passed all she was into me, by the incalculable osmosis of her life conjoining with mine.

In the same way that the poetry and stories we find unforgettable pass into us and become an essential element of our bodily and spiritual knowledge, our encounters with Alzheimer's can lift us, even when they are most dire, precisely because they courageously enact under duress what moves us, makes us feel crushed or abandoned, tender and longing for things to be otherwise.

I do believe that those dealing with Alzheimer's may witness and help their loved ones more than survive. They may lead us beyond forgetting to the sites of meaning by which we continue to companion each other against seemingly relentless odds. Their knowledge within the community may move consciousness of the malady--loss of memory--past this identifying disqualification of disease. We may mistakenly think forgetting eclipses other human abilities when it most surely does not.