Wood and Nails by Wally Swist
To watch a loved one disappear is to participate in an active tragedy. We can summon our best selves. We can repeat to ourselves that we are brave, even courageous. We can pray. I recommend it. I recommend praying as often as we are able for whomever in our lives is suffering from the throes of dementia.
All diseases are cruel. Dementia, arguably, is one of the cruelest, since it robs the sufferer of not only their memory, but also makes them experience a disorder of their personality. They change. Conversations once cherished and revisited many times will cease to occur. Conversations will become night sea journeys. The landscape will change to a darkness. There will be no land in sight. Your vessel will be missing a mast. Its hull will be in need of repair. The existing sails will be tattered. But you will learn that despite the storm having tossed you around over the sea, you will learn the worth of gratitude for the wood and nails that the vessel is equipped with. You will learn to depend on yourself. You will learn not to look toward any future whatsoever, but only live in the moment as your loved one who suffers from the negating malady of brain change known as dementia does. It will make you humble. It will make you angry at times. It will teach you that whatever you knew before is quite inadequate now. It will teach you compassion, and if you believed that you were compassionate before, it will rectify those coordinates and make known to you that you had no idea of what compassion was before you began the night sea journey of caregiving a loved one who is suffering from dementia.
Tevis, my partner, has been in decline for at least five years. I suspect she very well might have had dementia beforehand. I would have acted differently. I would have acted better. One comes through all of this only with great humility and the grace in possibly caregiving on the level of effecting some solace to the dementia sufferer, whether it be serving a favorite meal or viewing a cherished film or just going for a walk and naming the wildflowers and weeds in the scrub ditch beside the college athletic field. Tevis enjoys a weekly visit we make to Bellows Falls, Vermont, where we have made friends with the proprietor of a local bookshop, a used and antiquarian haven. We have made friends at the Commonsense Store, owned by a local commune, and have made friends with Ryan, Shuah, Nedivah, and many others. Friends help. But Tevis forgets the friends, forgets Bellows Falls, and forgets even having gone to anywhere with such a name.
Last night I decided against our weekly Wednesday trip to Bellows Falls due to forecasts of severe thunderstorms. This morning, no matter how many times I mentioned that we would change our plans and go on Thursday morning, I saw Tevis in distress in her bedroom when I checked in on her. She looked broken and lost. She saw me, but I don’t believe she necessarily recognized me.
“The van left without me. Why did it leave without me?” she groaned, wild-eyed.
“No one left without you,” I said. “We decided last night that we would delay our trip until Thursday this week due to forecasts of severe thunderstorms. We’ll go up to see our friends tomorrow.”
“Oh,” she said. “Will the others go up with us?”
“No, Tevis, there are no others, just you and me,” I responded.
Wood and nails. It comes down to wood and nails. This is what the night sea journey relies on. The vessel is compromised, one mast gone, sails tattered, the hull needing repair. But this is how the sea is crossed, depending on wood and nails, that those wood and nails will actually hold.
There is no land in sight. Our vessel is storm tossed. We don’t strain our eyes to steer toward land. To get through one moment and then on to the next is all that matters. To offer solace and compassion whenever necessary and whenever we can. Our patience will be tested, as well as our courage and our sanity.
It’s the wood and nails that form a frame of a house. It’s also the wood and nails that frame the space where a life once thrived. Tevis and I could converse on the nuances of the philosophy of Franklin Merrill Wolfe and the spiritual aspect of the poetry of Emily Dickinson, whom Tevis archived when she was the curator of special collections at the Jones Library in Amherst, Massachusetts. We could talk for hours about the psychospirituality of Caroline Myss and what day would be the very first each spring when the leaves would open. We took long walks and read books aloud. We spoke about things that mattered, and none of them were ever exactly ordinary.
All that is not necessarily gone, but it is simply not possible anymore. We still speak, but I listen to Tevis calling from a land all her own. Maybe that’s why I don’t necessarily seek land on the night sea journey: it’s due to my own fear of hallucinations, even if I’ve strapped myself to the remaining mast. Tevis mentions how she first met me when I gave her directions on how to get to Yale University in New Haven. I didn’t know Tevis when I was in New Haven and a member of the Yale community. But I nod and say, “Yes, I remember.” And I try to keep the boat in the water and steer on. I try to be grateful for the wood and nails of the moment.
How I have learned that the moment is all we have and to never to be taken for granted! The moments dissipate for Tevis and me, for all of us. But that is the pattern of how we move through our lives. This moment-to-moment, which is actually the experience of our own eternity, is just the wood and nails of the frame of our house, the frame of our loss.
I’ve never experienced loss on such a scale as I have in being a caregiver to Tevis. However, I’ve never felt this alive before, either. Loss and suffering are the wood and nails of our lives. When each moment matters we live our lives differently, or at least we try to, since what is also made apparent is that we will make mistakes. We will become impatient with the eightieth time we are asked a question as simple as when it will rain, or become angry when whomever it is that we love responds from a flight-or-fight perspective and begins to call out things that hurt and that are meant to hurt. Dementia caregivers all complain about being underappreciated by the loved ones they care for. Wood and nails. May they be an entryway to a sharing about two lives, both affected by dementia: one who suffers directly from it, and one who suffers because of seeing the sufferer suffer from it.
At the end of Out of Africa, Karen Blixen reveals that when she wants to torture herself even more than all of her losses, she chooses to remember the time when she and Denys Finch-Hatton were on safari and he brought her up in his biplane to fly over the savannah. When I find need to torture myself with my loss of Tevis and Tevis’s loss of herself to herself, I remember our awakening experience, which I believe we prepared ourselves for, and for the visitations of the angels, which I believe were in preparation for me to become Tevis’s caregiver.
In continuing this metaphor of wood and nails, I can only relay that it is they that hold our days together, Tevis’s and mine, yours and your loved ones. Sometimes I think that when I meet Tevis in the afterlife, she will reveal to me that she is displeased with my attempts in caregiving during her struggle with dementia, but the wood and nails and the reality of it all is that I do and have done whatever it is that I can and that is possible moment to moment. If I have failed, then I have failed. But what I must believe in is what Tevis’s dementia specialist has relayed to me: that “I keep Tevis alive every day.” I do so by being grateful for the grace of God and by living the wood and nails of each and every moment. ♦
Wally Swist’s books include Taking Residence (Shanti Arts, 2021), Evanescence: Selected Poems (Shanti Arts, 2020), and On Beauty: Essays, Reviews, Fiction, and Plays (Adelaide Books, 2018). A Writer’s Statements on Beauty: New and Selected Essays and Reviews was published by Shanti Arts in 2022. His latest collection, Of Angels: Poems & Translations, is forthcoming from Finishing Line Press. Two previous essays on caretakeing, “Participating in God’s Being” and “Transforming Responsive Caregiving into Seeds of God,” may also be of interest to readers.
Wally, your name is Compassion-With-Love.
A very moving account of the tragedy of dementia. Thank you, Wally.