Caring for the caregivers (with some help from Sir Arthur Conan Doyle)

Last night, with the window open and the instrumentals of rustling summer tree leaves from the dark forest behind the house moving through the room, I read in bed.

There were two pillows.

One, of course, for the head, and the other for a beefy tome.

I lay on my side facing the book, which was perfectly aligned with my eyeballs. A loan from my brother’s wife, it is Sir Arthur Conan Doyle’s The Complete Sherlock Holmes. 1,122 pages hardbound and heavy as hell. It’s impossible to suspend it in the air for any span of time longer than 10 seconds, as one would do with a paperback.

Sherlock requires his own cushion.

∞

Forms of escape may grant some folks a barrier against certain situations or people – or perhaps thoughts or emotions. Been there. Understood. Reading stands apart from the other soothers. It’s the only strategy that has stuck, personally, but more so, it’s the only entity from which I may quickly take my leave when help is needed in the real world. Then away I go from here when I pick up the story again.

∞

What is it like to be a caregiver? Many of you may already know.

As the population ages, more people are doing caregiving. About 1 in 3 adults in the United States is an informal or family caregiver.

-Mayo Clinic, “Caregiver stress: Tips for taking care of yourself,” Aug. 9, 2023*

There are moments when I forget my brother has progressive MS. I sometimes enter into a sort of numbed-out auto-pilot zone from the work around the home and jobs outside the home. There is also a lot of love in this house. Someone is always cracking a joke, showing appreciation, and generally making an effort to live moment by moment. Makes it easier to un-dwell on the inevitable.

Then, an opening occurs in my head, consciousness returns, and my stomach tenses. Sometimes I take time out to cry while other times I give a quick nod to the reality of death in life and move on to the next task that needs doing.

∞

Lemniscate. That’s the word that comes to mind. The infinity symbol. Strap yourself in for a ride that doubles-back on itself as caregiving may do:

He is in pain. He is comfortable and relaxed. He is in pain.

Good appetite. Refuses to eat. Appetite is back.

Confused, not making sense. Can hold a conversation and smile. Confused.

The number of things, too, needing to be done in a household containing a person with a heavy disability: no start, no finish, no math. Infinitely pass Go and move around the board again and again.

I try to keep a sharp eye on my brother’s wife as I also try to bring my brother comfort and care. They are both 73 years of age, one another’s true love since their hippie college years 50 years ago. 30 years ago, my brother was diagnosed. The progression of the disease has been a gradual crawl across time. She worked her ass off with no or very little help for many years.

I arrived late.Still, I arrived.

∞

We have no idea when his life will end. How can we? The human body wants to survive. It is a boney cage of electricity. Heart rhythm pumps 60 to 100 beats per minute. On average, we exchange oxygen for carbon dioxide 12 times per minute.

(Along with the speed of the Earth’s spin on its axis and its propulsion through space, I think these things when I feel as though I’m not doing enough, when I am too slow.)

He is getting closer, though. The oxygen compressor is set to max output (10L/minute), which is a lot – a lot – of not being able to breathe on his own. The hard days are outnumbering the good days.

(At the beginning of this writing, a nod. Now, eyes are moist.)

Through it all, moods in this house rise and fall. Regular sleep patterns are non-existent for me and my sister-in-law, stressors and activities varying each day. I worry about my sister in law’s backaches and grief just as I tend to the final chapters of my brother’s life.

Keeping thoughts stripped and simple seems to aid in maintaining my own health. Am I fed, watered, pooped, peed, cleaned, and rested? If all boxes are checked, body can keep going. Have I disappeared for a while inside a book, taken a nature walk, snuggled snout into cat’s silky coat? If yes, brain’s soul (or vice versa) continues onward.

∞

Grace. Another word that comes to mind. Several times over the past year, an old habit resurfaced: throwing myself under the bus. Internally, I fought Self against Self on the choice to move here, on family cohabitation dynamics, on the ability to handle life, loss, grief.

Grace, I’m learning, is the ability to wait. It’s patience, deep breaths, cries in closets and cars. It’s honesty, not with a smile, which reeks of hypocrisy, but with unwavering vulnerability. A shivering strength. An unfurling after drying off tears and acknowledging the immensity of it all.

Let me see – what are my other shortcomings? I get in the dumps at times, and don’t open my mouth for days on end. You must not think I am sulky when I do that. Just let me alone, and I’ll soon be right.

 --from A Study in Scarlet, Sir Arthur Conan Doyle

∞

There are no easy answers or ideas for a caregiver’s self-care. No matter what we do to escape, we perpetually return to a wake-up call from life and death. Still, if only for the briefest of moments, the divide may dissolve and a synthesis occur. I remind myself to take a deep breath for my brother and for myself. My own lungs are healthy but it’s easy to pass over that fact.

Taking care of a human who is unable to take care of themselves is the opposite of inertia. It's blood, bones, beats, breath. Supporting caregivers – ourselves included – is nothing short of living.

Keep pedaling.

∞

Before turning off the lamp last night, I finished The Adventure of the Speckled Band, the mystery of a twin sister’s death in a crumbling mansion. Transported to a town in the Mole Valley district of Surrey, England, my own surroundings and realities faded into the ether.

I escaped into that short story.

Returned.

Heaved book from pillow to nightstand.

Shifted body beneath curled up cat.

Slept.

*Another article helped in feeling less alone in this experience: "Caregiver Depression: A Silent Health Crisis," by Family Caregiver Alliance. The biggest takeaway: "for caregivers, depression is more common than you might think, and it’s a normal response to a difficult situation"