Something there is that doesn’t love a post, that sends me off to Facebook, Buzzfeed, and email, even when I know I need to write. It’s been more than two weeks since I flew home to Connecticut to visit my folks, seeing them, for the first time, living in separate quarters: Dad in his new apartment; Mom in assisted living. There was so much to take in that I didn’t even miss the basement. Dad has turned the master bedroom into a workshop, and it’s so full of train paraphernalia, tools, boxes, and scrap materials that it feels a lot like the basement anyway. Outside the workshop, his apartment looked much better than I expected. He’s got it decorated with paintings, family photographs, and even a sconce holding a mint green candle. A woman in his bridge group told him, “You can tell this is a man’s apartment,” but I disagreed, saying the sconce alone was grounds for recalling his man card. The punctum (to borrow a term from Roland Barthes)—the detail that shot out like an arrow and pierced me—was not the sconce, however, but the corner cupboard. There was no room for it in the living room, so Dad put it in his bedroom, asking my sister to arrange Mom’s china collection just as she’d had it. There’s no language for love like that.
When we got to the Hearth, Mom recognized me from across the activity room, brightening when she saw me. I wonder what I looked like when I saw her there, sitting in a string of chairs lining the periphery of the room, supporting timeworn bodies of various shapes, sizes, and degrees of motor control. My face, answering hers, must have mingled shock with recognition and relief as I compelled a smile. How many times in my childhood had I been among children’s choirs and Girl Scout troops paraded through nursing homes to cheer the elderly residents? Yet never once did I imagine my own parent sitting in one of those chairs.
I don’t think my Mom ever imagined playing Bingo either—or rather, trying to play Bingo, but having difficulty following the logic of the game and struggling with her shaky finger to slide the red plastic window across the number. Mom never liked Bingo, but now she joins whatever group activities are offered. She accepts a snack of three Lorna Doones, tasting one and saying, “Oh, that’s dry.” She eats them anyway, then swallows the juice from the Dixie cup delivered a few minutes later.
Stiff and unsteady, she walks slowly with a walker and needs help to stand and sit. When she’s moving by instinct, she can be quite agile: once she dropped a Kleenex, bent down, and retrieved it without a wobble. But if she has to think about what she’s doing or follow instructions, all systems overload, the mind freezes, and the body balks. I imagine moving through the world for her is like it would be for me if I lost my glasses: blurry, uncertain, and unnavigable.
Her cheeks are soft, smooth, and pink. She’s ready with a smile or laugh, and likes to give and receive compliments. She remains preoccupied with her own symptoms and ailments, giving unsolicited “organ recitals,” especially when Dad is around. She enjoys food without the fear of weight gain that haunted her all her life, and once, when Dad put his arm gently around her, she exclaimed, “That’s WONderful!”
There are jarring moments of clarity. When my sister and I were driving her to the nail spa for a manicure, she said, “I just hope I don’t give you both the disease I have.” Did she mean Alzheimer’s? Most of the time she no longer seems aware of her dementia, though she did qualify one remark, saying, “The thing that stands out most in my mind, and I don’t know if this is true…” The vision—of my sister as a toddler trying to run away—was probably true.
Most of what she says makes no sense. She mixes memory, imagination, and perception in an irrational blend. We try to find humor in the way she imagines suitors everywhere, wanting to marry her. Dad says, “Well, you can see why they would want to be with her. She’s a very attractive woman.” He says this without irony (another punctum). We no longer correct Mom or try to decipher her logic. Instead we just pick up a piece of something she says and thread it into something that makes sense to us, as if we were picking up a nightgown blown off the clothesline and pinning one corner back on, leaving the rest tossing in the wind.
Truth is, it’s not much fun spending time with her in the Hearth. You can’t have a real conversation, and there’s not much to do. Flip through photo albums, play a Broadway show CD, or take her down to the activity room to listen to a middle-aged guy play Irish songs on his keyboard. Pass a woman in the hall on the way who complains, “They say it was Irish music. That is NOT Irish music! It makes me sick to my stomach.” Sit next to another lady who seems much sharper than Mom. She looks right at you and says, “I am NOT happy.” You say, “I hope the music cheers you up,” and indeed it does, because during a jig, she’s singing along, tapping her feet, bobbing out of her seat; then a waltz makes her weep. You wish Mom would respond more to the music: she seems so vacant. When a male resident shuffles into the room, the lady next to you leaps up, exclaiming, “That’s my father!” She sits down, caught up in the next tune. You tell Mom you have to go and kiss her goodbye. She doesn’t seem sad.
Taking Mom out of the Hearth isn’t much fun, either. When you do, she’s so disoriented that she scarcely knows where she is or who you are. You steer her into the nail spa, and she stiffens in her seat. You have to stand behind her to keep her chair from rolling backward, and every so often, you prop her back up in her seat. You gently massage her arms and shoulders, trying to relax her muscles, but she doesn’t respond to your touch. When she gets back to the Hearth, she sleeps all afternoon.
You just want to avoid the situation. You’ve finally accepted that there’s nothing you can do, nothing you can fix. You can’t even soothe her. She will be happy to see you, but she won’t be unhappy when you leave. So leave. Get away. Put it out of your mind.
Because you’re thinking terrible thoughts: what is the point of such a life? Each day, a pattern of dull, meaningless activities, punctuated by snacks, meals, and bathroom breaks. Visits from family members, old friends, a doctor, nurse, an attendant blur together. Is she just filling space, killing time, waiting for the next small pleasure that’s offered to her—a sip of juice after a dry Lorna Doone?
And then you get really morbid: Is her life really so different from yours? Sure, you have more control, more agency, and decision-making power. You’re a productive citizen. But in her own way, she’s a productive citizen who also contributes to the economy: think how many jobs depend on her needs—cooks, caretakers, nurses, administrators. And aren’t you just living your own routine, waiting for the next pleasure that falls within your own, slightly larger orbit? What makes your life any more meaningful? What keeps you living, knowing that you’re on the same path of inevitable decline, leading inexorably to death?
See Robert Penn Warren, “American Portrait: Old Style“:
“But Jesus,” he cried, “What makes a man do what he does—
Him living until he dies!”
Suddenly, in these words, you see something not morbid but heroic in the human will to live. It’s a marvelous mystery, this impulse to go on, whether you’re confined to the Hearth or free to roam the earth. “Doesn’t everything die at last, and too soon?” Mary Oliver writes in “The Summer Day,” insisting that mortality renders life more piquant and precious, asking, “Tell me, what is it you plan to do / with your one wild and precious life?” Maybe, as Oliver suggests, our greatest task is to figure out “how to be idle and blessed,” as Mom surely is, secure in the Hearth.
I try to make peace with thoughts of heroic endurance and blessed idleness. Dad and I go to see Mom for the last time before he drives me to the airport to catch my flight home. Before I even get there, the wisdom of the poets is drowned out by the throbbing thought, “This may be the last time I see her that she recognizes me.” The visit isn’t any different from any other, except that I can’t stop thinking, “this may be the last time,” and I can’t stop weeping. The visit isn’t any different from the last; my sorrow stems from the sentimental frame I impose on the encounter. If only I could change the frame. Instead I kiss her goodbye and fly away.
Featured Image: Steven Craven, “Christmas Day in a nursing home.” 24 December 2008. Geograph.org.uk. Creative Commons 2.0 licensed.
Thank you for sharing, Suzanne. Working out the complexity of your situation with these posts is yet another way that the Valerie who raised you lives on–no doubt she helped nurture your love of words.
I found it fascinating that you started this post in first-person, moved into second-person, and then back into first-person. Whether conscious or not, that change highlighted to me the struggle you are navigating. So much of this journey must feel lonely. Know that the love, thoughts, and prayers of many are with you as you travel this difficult path.
Susan Possidente Good says
I read your beautiful piece on your sister Beth’s Facebook post. You have captured so very well the essence of this dreadful disease, and the emotional heartache it unwittingly unleashes. My mother too, is on the Hearth. I steel myself every time I visit, it is so difficult to see the vacant look in her eyes, and heartbreaking to try and help my father, who like your father is holding on to the threads of their love. Thank you for sharing.
Suzanne Churchill says
You’re a sharp reader, KM, even if you are a psychologist! 😉 The switching from first- to second-person was both spontaneous and deliberate—a symptom of self-estrangement that occurs when a loved one’s Alzheimer’s turns you into a person you’d rather not be, as well as a way of encouraging readers to step into my shoes.
Alan Michael Parker says
A tough visit, Suzanne, but we’re the better for your writing about it so beautifully. I think it’s possible–without being too Pollyannish–that your stepped-up acuity in response to her deficits replicate her teaching you again to read. How you have to observe, and process, even more than just on a family trip; you have to pay extra attention, and be the person who knows. Thus it seems consistent that part of a language-based person’s therapy and grieving would take the form of language….sad and compelling and in the writing, delightful.
I was moved, as I have been by every post you’ve written. Please keep these going.
jean kirkham says
Dearest Suzanne—-You must keep writing and perhaps some day publish a book on this most personal matter for you. You write beautifully–My wish would be that you did not have to write about all of this and that it was not happening. But it is and your Dad and Mom are dealing with it –each in their own way, with great courage.
I am aware now as I reach 75 how short and precious life is. –to be enjoyed every day and counting the blessings we have. We too, as you know, have had different kinds of losses and have moved through grief with therapy to deal with these difficult things. The amazing thing for me is that one cannot live in grief for ever or you too would die of it all. You will move through this experience learning much, giving love to your parents becoming stronger as you have too.
jean kirkham says
hEY–I AM SO WORDY–I GOT CUT OFF!!!—so to finish——Brian and I send you all blessings and love and hope to get down soon after Easter to Connecticut –from the COLD NORTH!!!!–snow banked still all around us—love jean xxxoooo