“What day is it today?” Charles asked.
“Tuesday,” Linda replied.
“Good. What’s your doctor’s name that we’re driving to see?”
“That’s right! You’re doing great. Now, again, what day is it today?”
A half-hour later, Charles and Linda arrived for their regular meeting with the psychologist, scheduled after her Alzheimer’s diagnosis many months earlier. When Dr. Lopez asked Linda what day it was, she couldn’t remember, even though she’d practiced with Charles over and over during the drive. And a clock was now way too complicated for her to understand.
The dark curtain of Alzheimer’s descends in inexorable stages. The very first stage must be the worst for the patient: receiving the diagnosis, but having enough awareness left to understand what’s going to happen. Then as the patient loses more cognitive awareness, the nightmare expands to the caregiver.
Charles, whom I’d met at my church, was one of the most patient people I knew. He also had a brilliant career in management, ultimately becoming a senior administrator of an international company. But managing Linda’s illness was a wholly different challenge.
“Linda, you’ve got to have three more bites,” he insisted to her at lunch during one of my visits to their home.
She looked at him resentfully. Who was this person who kept ordering her around? He looked familiar, and sometimes she thought she could remember his name, but she had thought he was a nice man, not like this.
“You have to eat! Now, take this spoon and swallow.”
Linda finally did. But she was clearly pretty annoyed about it.
As we watched over the months, kind, warm Charles became short-tempered, defensive, and irritable. His friends began to suggest he take a respite break: arrange for Linda to stay for a week, or even just a weekend, in a high-quality local nursing home. But he’d always been able to handle any situation that came his way; why should this be any different?
“She wouldn’t understand,” he protested. “It would really upset her.” And of course he was right.
Finally, though, we persuaded him to at least give it a try. Charles went to visit his son and daughter-in-law in Malibu for a week. When I talked with them about it later, they said he’d been pretty quiet most of the week. He’d gone with them on a whale-watching cruise, a visit to the museum, out to a new play, and had seemed to enjoy each activity well enough, but clearly didn’t feel like talking about Linda, so they didn’t pry. He told us later that until that week, he’d had no idea how tired he was.
* * * * *
In many ways, Charles and Linda are like millions of other Americans who currently deal with Alzheimer’s in themselves or their families. Current estimates indicate that 4.5 million Americans currently have Alzheimer’s, and this number may swell to as many as 16 million by 2050. And surely at least the same number of people love and care for those with Alzheimer’s: spouses, family members, nurses, therapists, ministers. The kind of “vicarious traumatization”—or, less officiously, “compassion fatigue”—that exhausted Charles affects millions in his position.
* * * * *
Now, imagine that Charles, his son, and his son’s wife are at a pierside restaurant in Malibu, admiring the view and enjoying a delicious dinner of fried shrimp and chips. They run into Ted, a friend of Charles’s son, who sits down to join them for a while. Ted, meaning well, starts telling Charles that he shouldn’t eat fried food; especially since Charles is getting older, salads are much better for him. And besides, Ted explains, those shrimp were harvested from Thai shrimp farms that destroyed many acres of mangrove swamps that used to protect those shorelines from hurricanes.
Picture Charles as he stops eating and sits looking down at his plate; he doesn’t say anything. Everything Ted said is true.
But both Charles and Linda desperately needed Charles to take a respite from increasing darkness as the curtains of Linda’s mind were drawing permanently closed. Without taking time to open up the drapes, breathe fresh ocean air, enjoy a new horizon, and get away from the weight of continuous negativity, Charles would more quickly lose his ability to take care of her as her needs increased unrelentingly. And without a respite, his own suffering would increase: compassion fatigue brings measurable physical, psychological, and spiritual pain. Charles needed a break, not a lecture bringing even more bad news. Just for a week.
* * * * *
We who struggle to hold back the darkening curtain of environmental damage suffer compassion fatigue as well, as we work desperately to minimize the deterioration of our beloved nature. We cling to frayed threads of hope in the face of impending collapse of eons-evolved natural systems, trying to drag the curtains apart just a little, to prevent the increasing darkness from acquiring an Alzheimer’s-like inexorability.
Where is our respite? You cannot open any environmental magazine, or even a newspaper, without coming across yet more information about the devastation we humans have wrought. We read these because we care, because we want to know more about what we can do to change our culture’s behavior, our beliefs, our beatitudes of destructive consumerism and selfishness.
But sometimes we need a break. We need to return to what we love, the exhilarating and precious natural world, to extend to ourselves and each other a respite of undampened joy in the beautiful and the fascinating.
In designing this blog, I’ve intentionally stayed away from sharing yet more of the depressing, enervating environmental news that crosses my screen multiple times a day. You already know about all that. And you know where to get more of it, if that’s what you want to read on a given day to provide you with the tools you need to save what you love.
What we so often lack in these darkening days is delight.
Kathleen Dean Moore is one of my favorite nature writers, and a wonderful writing teacher and mentor. Yet I disagree full-throatedly with what she wrote recently,
And I can’t read the literature of willful innocence, either. These are nature books by authors who celebrate a beloved place without acknowledging the anthropogenic violence it’s suffering, or books that rejoice in the healing power of a hike through a forest, say, without noticing that it’s poised to burn to the ground. These days, looking away is hard to forgive.
I’ll have to stay unforgiven, I guess. I will continue to write about chickadees and bushtits, spiders and seals: small creatures of forest and sea, living their little lives in shimmering, stunning, awe-inducing ways and means. I’ll let others expound on the anthropogenic violence that pervades their world and ours. I’m convinced that we deserve a respite of delight now and then: for our own sake and for the creatures. At least, I need it.
* * * * *
Coincidentally, on the same day that Moore’s essay arrived on my Facebook page, I also received “A Brief for the Defense,” a poem by Jack Gilbert, courtesy of The Sun magazine. Here’s an excerpt; please read the entire remarkable poem.
We must risk delight. We can do without pleasure, but not delight. Not enjoyment. We must have the stubbornness to accept our gladness in the ruthless furnace of this world.
I insist on our right to be dilettantes—ones who take delight in things—and on the legitimacy of moments of joy unfettered by reminders that we’re nearing the event horizon of an ecological black hole. That doesn’t mean I’m one bit less aware of how fragile and threatened it all is. It just means I never forget why it’s worth saving.