Respect. Sometimes I wonder how I did it all, running to visit and care for my mother (who was in a facility 30 minutes north of where I live) often after work, often twice during the week and every Saturday or Sunday. I had books on dementia, and others dealing with death. One, I only pulled off my bookshelf today, where it was buried beneath a few other books as my piles of things kept getting shifted around over the two and a half peak-Covid years I was directly involved with my mother’s care. And here is the point: I managed as my piles of things kept getting shifted around.
My home became a stage for what mattered: The piles in the kitchen were items that needed immediate attention, usually bills. The dining room table was a place for upcoming things, or once Mom transitioned, after-death paperwork. And my office became the place where all completed piles needed shredding or filing. I didn’t have time to read whole books on matters of dementia; moreover, I was living these matters in real time and the wisdom of the literature wasn’t always satisfying for the simple reason that what I really needed was people who understood me, exactly, in real time.
Now that I’ve journeyed with my mother through her condition, I can turn to my books and see, indeed, they are spot on and provide truly helpful information. Some of them I read a little during my caregiving, by chapter or brief pages I leafed through for validation, underlining important points that would serve me, repeatedly. The one book that served me best was No Death, No Fear by Buddhist Monk Thích Nhất Hạnh. I kept this book at my bedside, often randomly opening to any page, to find a helpful synchronicity that was reassuring as my mother edged ever closer to her final days, passing through her last 11 months with crisis after crisis as her brain slowly filled with the plaque that limited, bit by bit, its ability to communicate with her body. This book helped me to remember many valuable lessons while coping with the stress and heartache that are part of caregiving. One lesson was to remember to breathe.
Sometimes I wish I’d had more time to read, and by that what I really mean is more energy; but the truth is most of the literature added to my stress. I knew what was happening to my mother. I knew what was not happening with her, or for her, so I didn’t need to read about it, per se, I needed to know what my options were while advocating. I needed a support group, not a book. I needed community, not isolation. I needed to know the details of what my mother’s brain was going through, and I needed to try to stay present to her while at the same time warding off where I could the impending impacts to her body caused by her brain’s deterioration. When I noticed her imbalance, I spent hours trying to find her a better, safer shoe. When her pants became too tight, I spent more hours finding her buttonless, zipper-less pairs that were easy to pull up and down but were still cute enough to please her. Mom was still aware of how she looked, and helping my mother retain her dignity was ever-present in my heart and mind.
One Saturday night, exhausted, as I was leaving the facility around 9 p.m., a Care Assistant stopped me and said she had to do laundry for my mom and Mom was completely out of laundry detergent. I opted to stop at a big box store just a few miles away and return with the sensitive skin detergent my mother needed. I bought two so I wouldn’t have to do it again for quite a while. This is what happens. One more thing becomes one more thing added to it. I would go home with no mental energy for a well-meaning, instructive book. One summer, I learned to love watching the last of a baseball game before shutting down for the night….
But as I was saying, sorting through books today, I found one I’d forgotten I had purchased. It’s by Joan Halifax, PhD, a Zen priest, and anthropologist, who served on the faculty of several universities, including Columbia, Miami School of Medicine, and Naropa, as well as lecturing at Harvard and Georgetown. Her book is, Being with Dying: Cultivating Compassion and Fearlessness in the Presence of Death. I had a marker left in on one page, and one of my marginal arrows pointing to this sentence: Being with dying often means bearing witness to and accepting the unbearable and the unacceptable. Well, that’s it then, isn’t it? That is the dementia journey in a nutshell. That is the tug and release on our hearts, on our time, on our need to care for our loved one and our need to care for ourselves.
So this is just to say, sure, pick up that book. It might serve you well at some point. But don’t worry if you don’t have time to read it cover to cover. There is a poem here, that comes just now to my mind. It’s a beautiful villanelle by Theodore Roethke and opens, I wake to sleep and take my waking slow…I learn by going where I have to go. Don’t be afraid to learn, however quickly or slowly, as you care for a loved one, and yourself, while traveling the dementia journey. And always trust your going where you have to go, knowing it’s a learning curve where everything leads to something else.
THE WAKING by Theodore Roethke (1908 – 1963)
I wake to sleep, and take my waking slow.
I feel my fate in what I cannot fear.
I learn by going where I have to go.
We think by feeling. What is there to know?
I hear my being dance from ear to ear.
I wake to sleep, and take my waking slow.
Of those so close beside me, which are you?
God bless the Ground! I shall walk softly there,
And learn by going where I have to go.
Light takes the Tree; but who can tell us how?
The lowly worm climbs up a winding stair;
I wake to sleep, and take my waking slow.
Great Nature has another thing to do
To you and me; so take the lively air,
And, lovely, learn by going where to go.
This shaking keeps me steady. I should know.
What falls away is always. And is near.
I wake to sleep, and take my waking slow.
I learn by going where I have to go.