Anne Todd Hochberg Chromogenic print 6”x 9”

When my father was making his slow decline into the grip of Parkinson’s disease, I found it easy (embarrassingly so, in retrospect) to criticize my mother for what I confidently labeled her unnecessarily grim view of the situation. She always seemed to me to be looking ahead to how much worse she knew his condition was likely to get. Years after the deaths of both my parents, I wonder why it took me so long to understand how to navigate relationships and discussions that were fraught with anxiety over the inevitable. We cannot—and should not—try to tell others how to deal with their sorrows, let alone tell them how to grieve. This I know in my deepest core, as I now watch my own husband slowly slip away from me with, yes, Parkinson’s disease.

What touches me most deeply, however, are the implicit lessons I have finally learned from my mother: Living wholly in the present is probably neither possible nor desirable, and anticipating the future has real value. While I am gradually learning to acknowledge that I never really understood Mother and her way of coping with Dad’s disease, I have found great value in thinking ahead—most importantly, with my husband—about very practical changes we could make to enable us to face a parkinsonian future together.

So, to begin with the most practical, we installed railings at the entrance to the house and banisters on both sides of the stairs, and we re-arranged and even removed some furniture. Later, we took up the scatter rugs, replacing them with plastic office chair mats and putting chair glides on my husband’s dining room chair so he can slide in and out more easily from the table. More recently, we installed grab bars and arms around the toilet, got a shower stool and then put a transfer bench in the tub; all this has made essential tasks in the bathroom more manageable. For me, seeing to these physical adjustments before there was a genuine need for them was a means of retaining some sense of control over the disease, a way to avoid becoming its helpless victim.

What I do not do is spend time worrying about the kinds of things my husband will no longer be able to manage. Certainly, in no small part thanks to having watched the way my father was affected by his Parkinson’s, I am acutely aware that I cannot predict the future. I do occasionally, however, contemplate the more distant future. While I have learned not to spend time wondering whether our participation in some recurrent event might be for the last time, increasingly I find myself actively engaged in what I think of as anticipatory grieving. Thus, instead of worrying about what form my husband’s decline will take, I contemplate an unknown time in the future when with virtual certainty I will be participating in that or some similar event we have “always” attended together . . . alone. A wave of grief washes over me.

The first such wave caught me quite off guard, but I am no longer surprised by the sweep of these emotions. In fact, I rather welcome attacks of future grief, if that is a permissible locution. I see and feel them rather as a way of trying on the idea of being alone. I sense that it would be impossible to repeat alone the travel itineraries we once shared or to attend alone annual events we had attended together without being caught up in a rich web of memories and experiences jointly undertaken. Such memories, I fully believe, will give me comfort and pleasure that, however tinged with sadness, will in the end grant me more enjoyment than not.

My confidence in this anticipated pleasure comes from a beloved friend who outlived her husband by decades. I once asked her whether she had ever considered moving after he died, whether staying on in the home they had shared was perhaps too laced with sorrow. She promptly responded in a firm and convincing negative: “No,” she told me. “Here I am surrounded by memories. I can still hear his voice, his words of caution when I am about to do something he thought ill-advised; I can relive our time together more easily than if I were in a place he never knew.”

Her pronouncement on this point resonated with me, though I felt instinctively that being alone in our familiarly shared spaces would take some getting used to. So that is one of the things I am working on now, facing the prospect of what it would be like to be home alone. For better, for worse, I have had practice during the weeks my husband spent in our local hospital and a rehabilitation facility. Of course it is better when he is here, which is why I have promised him that he is now home to stay: better for him, better for me. Yet I have, perforce, lived here by myself for long days, nights, and weeks, and thus I know already that I can and will survive the anticipated grief of being on my own in our home.

Another advantage of engaging in anticipatory grieving is that doing so stirs past memories. As thoughts come to me, unbidden, of how I will need to do this or that alone—whether here at home or farther afield—I recall the times we did those things together, and I am all the more eager to remind him as well. A word or two suffices to bring back for both of us some odd or treasured experience, some ridiculous (maybe even risky) situation we had gotten ourselves into, road races run and mountains climbed together, lectures given and listened to, getting lost and finding our way, friends and family we have loved deeply—in short, what comes back are memories of a life well lived, together. Too much of the time we tend to take all that for granted. Imagining its cessation, giving myself up to the anticipation of grief over its loss, serves to jolt me back into the present and what we still share even as it gives me practice thinking about how much I can and will do on my own.

We may, of course, have many years together still. But my husband is a decade-and-a-half older than I, and we both know that Parkinson’s is incurable and that it will take its final toll at some point. My husband continues to support my career and wishes no less for me than a full life after he has died. Being assured of this softens the grief I know will be mine when he does die. Meanwhile, anticipatory grieving helps me take pleasure in the past, steady myself in the present, and prepare for the future. I am not overwhelmed at the prospect of life alone, however much I might have wished for things to go otherwise. We have had—and still have—a rich life together even now as I try on for size the grief I know I will one day experience as a very present entity.

 

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CONSTANCE E. PUTNAM, PhD, is an independent scholar from Concord, Massachusetts who specializes in medical history (19th and 20th century, United States and Hungary), bioethics (doctor-patient relations, death and dying), and the history of medical education (especially in the United States). She has published a wide range of articles and book reviews in professional journals, magazines, and newspapers; among the several books she has written is Hospice or hemlock? Searching for heroic compassion (Praeger, 2002).

 

About the photographer

TODD HOCHBERG is a documentary photographer who works in conjunction with hospital bereavement programs, palliative care programs, hospices, and directly with individuals. He makes documentary photographs and legacy video for individuals and families who are struggling with end-of-life transitions. His work resides in the permanent collection of the George Eastman House International Museum of Photography. He was a finalist in the W. Eugene Smith Grant Competition in Humanistic Photography in 2003. He also had a solo exhibition at Northwestern University Feinberg School of Medicine in 2009. Visit his website at www.momentsheld.org.

Photographer’s statement:  Legacy work is a personal, emotional, and spiritual exploration of one’s place during the time of a life transition rather than merely a chronological recall of life events. Through documentary photography and video, I help individuals and families who are struggling with a serious illness or death of a loved one. The resultant images offer a gentle link to memories of significant loving relationships and precious experiences, which may contribute to emotional healing.

 

Highlighted in Frontispiece Spring 2011 – Volume 3, Issue 2
Spring 2011  |  Sections  |  End of Life