Lost & Found
“‘It has to go all the way to the beginning!’ Holding her hand, I asked (carefully, because questions would arouse consternation) if she wanted me to tell her who she is and how she got here now. ‘Yes!’”—William A. Balk, Jr.
Epicurus’ Porch
By William A. Balk, Jr.
ELKO South Carolina—(Weekly Hubris)—February 2018—“I can’t understand! Start at the beginning! I can’t understand a thing that’s going on!” We were in the middle of watching one of the evening news programs on television, my 93-year-old mother and I.
She has stoically faced the growing effects of dementia over the last several years, and other physical ailments have brought her to being bed-bound for the last year. It is not unusual that events as portrayed on television leave her desperately confused and asking for explanation.
As her caregiver, I usually attempt to summarize the baffling news story for her. The point at which I start is simply to concur with the accuracy of her observation—the story makes absolutely no sense at all to me, either, and I find that an honest response is best. The rest is simply to describe the high points of the story, and that usually suffices.
“No! That’s not it . . . you have to go back, back to the beginning!”
Maybe a little more background—so I begin again with more details.
“No! No, no, no! Before! I can’t understand a thing!” She was really distraught, and my efforts, usually sufficient, were way off the mark. I turned off the television, sat close to her, holding her hand, and tried to guess what I was missing.
Hers was, I realized, suffering more deep than a confusing news story should evoke. I also knew that her dementia sometimes leaves her utterly abandoned, alone, with no ability at all to recognize anything around her, to make the most obvious connections among people, objects, herself, her condition. A few gentle questions, her clear answers of dismay, and I recognized that she had suddenly found herself with no knowledge of who she herself was, who I was, where she was, how she had gotten wherever “this” was.
This was not the first time, certainly, she had so completely lost identity and connection to the world. Years before, when we knew we would some day likely have to face the depredations of memory loss, dementia, Alzheimer’s, I started to prepare us all for ways that might help when the time came. Now there were times when she could not identify us and, as now, she could make absolutely no sense at all of herself, her surroundings, her time. One benefit of the years of preparation for this eventuality has been that she still trusts us to help her through this maelstrom; she still has confidence that we will at least be able to comfort her, even though she does not know specifically who we around her are.
“It has to go all the way to the beginning!”
Holding her hand, I asked (carefully, because questions would arouse consternation) if she wanted me to tell her who she is and how she got here now. “Yes!”
That’s just what I did, then. I told her about her parents, about where she grew up, about falling in love, about marrying, about marrying again, about her children, one by one. I described where the family lived, about her raising her children to love reading and learning, about becoming a school teacher, about being celebrated in her community. I told her about my father’s illness and dying; about my brother’s death, about how she has her whole family still around her, all looking after her, all loving her. I asked if that’s what she wanted me to tell her about, even though I knew that her perforated brain can no longer hold on to these connections, to such a story.
She was still clearly agitated, but greatly reassured. “No. Is that all? I still don’t know what it all means!”
Nor do I, I thought; nor do I.
Calmed, but anxious still, she waited for me to try again.
And, once again, I started at the beginning. I added some details omitted the first time. When I described her having children, I dared to ask a question: “Do you know who the very first child you brought into the world was?” And it was with real joy that I could tell her, “It was me!” For the first time that night, she managed a smile.
There is an obvious joke buried in there somewhere: a septuagenarian baldly claiming to be the nonagenarian’s baby.
Whether she was smiling at the joke, or with a sense of matching up some difficult concepts for the first time, the smile was a breakthrough.
The story of her life this time seemed to fit into something recognizable, something she could claim as her own, even if its evanescence denied her claim to it as memory. Her inept synapses may deprive her of any lasting, continuous narrative of all that has transpired, either in her life or in an evening’s conversation, but it is certain that it has made a memory I, myself, will hold onto until the cerebral perforations and broken synapses wipe out my own connection to this world.
And who will hold my hand and tell me my story?
William A. Balk, Jr.
Born and reared in the Coastal Plain of South Carolina, William A. Balk, Jr. was educated at the state’s namesake university, became an activist confronting the power of the modern State and its military, and spent two years in a radical gay commune in the nation’s capital. He has taught textile construction and design for the Smithsonian and Textile Museum in Washington, collected modern porcelain masters, and has submitted to a peculiar affinity for independent book stores. Balk returned to the South Carolina Low Country in middle age, as well as to his extended family, and a literary life lived largely out of doors. Book stores and gardening remain his perennial passions, as does writing. He has been a regular columnist for “The Lowcountry Weekly” newspaper for seven years; he is included in the award-winning book, Our Prince of Scribes: Writers Remember Pat Conroy. He has assumed several new roles in recent years, including caregiver for his near-centenarian mother, advisor to the Pat Conroy Literary Center, and member of the Board of Directors for South Carolina Humanities. Like one of his heroes, Epicurus, whose philosophical school was called “The Garden,” Balk’s aim has long been “to attain a happy, tranquil life, characterized by ataraxia—peace and freedom from fear—and aponia—the absence of pain—and by living a self-sufficient life surrounded by friends.” (Author Head Shot Augment: René Laanen.)
22 Comments
gary geboy
Lovely story Will, unfortunately there a some questions that will never be answered.
Mary Laura Jones
Wonderful, Will. Always so thankful to read your reflections, Mary Laura
Claire Bateman
So painful and beautiful and inexplicable and moving…
Will
Thank you, Gary. You’re absolutely right…there are some mysteries that are always going to be mysteries. Thanks for reading.
Will
I’m so pleased, Mary Laura, the piece touched you. It was one of so many moments when the old teacher, now utterly without a lesson plan for this stage in her life, still has so much to teach. Thanks for reading and commenting.
Will
Thank you, Claire. Yes – the process is all that; most of us know some of it, but the gift of living through this process (for me, certainly; I cannot speak for how this process is for Mama) is that the knowledge, the sharing, the growing all develop so much beyond anything imagined before. Thanks for reading, kind one.
Aida Rogets
Thank you for writing this piece. Heartbreaking. I know you hear it a lot, but I’ll join the chorus: your mother is lucky to have you.
Tom Hall
Wil, Beautiful and emotional. You are performing a wonderful act of love for you and your Mother. At the end of life, with you and her family around with love and care…so right that you are there to hold her hand. I cried for you, for your Mother, for myself. Thanks for this essay. Simply Beautiful.
Will
Aida, that’s so lovely to hear . . . and so lovely to hear from you. I don’t run into you often enough, but I do encounter with pleasure your articles and essays and commentary. Thank you!
Will
Oh, thank you, Tom! You’re so kind to read and to respond here. I hope to see you all sometime soon!
Alex
“The smile was a breakthrough.” How beautiful. Up to your usual standard, Will.
Will
Alex, thank you!
Jean
Oh, my dear. What a remarkable piece this is. It is, as many have noted, heart-breaking. But, having cared for my mother as she slipped into dementia, I also recognize the joys of the actual, real connections, when they occur. The everyday triumphs that keep life sweet enough to enjoy. Thank you for this lovely perspective.
Will
Oh, Jean! Thank you so much for these words. I never know whether I am writing these little episodes for my sanity, for my memory, for the possible edification of so many others in situations like ours, or just because it feels good to write about her – about us. Especially gratifying for me are the encouraging words that people who know well and understand deeply the depth and range of effort and reward that come with the job. It is indeed an ongoing revelation.
Thanks, again, Jean.
diana
I will join the chorus. Every time you write about your mother, you write with such love and patience and I think of all the friends I have who are struggling to cope with a spouse or parent who’s not really there any more and wish them the gifts you bring to your mother’s care. My heart aches for you but is so inspired as well. And to be able to write on top of all you’re doing is ‘awesome’.
Will
Thank you, lovely Diana. I am continually astounded at how many of my contemporaries – and younger, too – who are now finding ways to get through this process. All of us seem to be finding the need to support all the others, and relishing the comfort, understanding, and support offered by our caregiving fellows and caring friends. There’s an excess of adulatory expression, of course, but even that is welcome and appreciated – but we all need and benefit from extending kindness. Thanks again for reading and for your lovely words.
Mary Ellen Cooper
Mr. Balk,
Your writing has a tone of humanity within it that the wider world needs to hear. I pray that Elizabeth’s newsletter will go far and wide now, with such an extraordinary staff and important things to say.
My stay two years ago in a local nursing home included about a week’s time when my medications were so overwhelming I could not remember my own name, Barack Obama’s name–nor where I lived. Inside my head I knew the answers, but when I spoke, the wrong information, or none at all, spilled through my lips. I have had many experiences of true fear in my life, but none so crippling as those I had that week, also including severe paranoia and hallucinations. Inside my brain, I was frantically trying to count to 100 and remember my ABCs, but to no avail. Thank heaven for my daughter.
I trusted her to help me out of hell and back, and she did, as you have done for your mother.
I hope my daughter’s children care enough to help her when her time comes. I hope that disease can be halted and reversed before that day comes for each of us. I speak out as often as I can. Like you, we must all speak out. Thank you again, most sincerely.
Will
Mary Ellen Cooper, you touch my heart with your experience. I cannot hear a description “from the inside” from my mother, describing how it is for her. That is why your description is so important and so harrowing to hear. I can reflect on my own experiences – I can well remember tripping on LSD and mescaline in the good old days – and I can rely on friends’ descriptions of their own bouts with mental loss; but it only approximates what my mother must face repeatedly and perpetually. I do believe that simply listening, acutely and lovingly, give insights that point my way to seeing her and relieving her distress.
I do sincerely thank you for your words here…they bolster my strength and do truly encourage me with the time we have with my mother. Do continue to speak out, for it means a great deal to those who suffer and even more to those caring for the suffering.
Laura Kolb
Thank you for such an intimate personal memory,beautifully told . :):)
Will
Laura Kolb, thank you! I’m pleased that the piece touched you, and especially that you offered to share your response to the piece. I am much obliged
Kathryn Nolan
Beautifully written, engaging so loving. I will share with my cousin’s daughters who are dealing with the decline of their brilliant father. Also a teacher, college professor in good health to start retirement only to start a withdrawal into another world.
Thank you for sharing
Will
Kathryn Nolan, you are very kind to comment. I’m saddened that your family, too, must have to deal with this difficult and challenging process, but I hope that the circumstances and the whims of the gods may provide you all with as many blessings and gifts along the way as they have provided us on our own journey with our mother. It’s rarely easy, but there are wonders along the way.
I’m grateful for your reading and for your words.