Brain cancer and books: choices in caregiving

By the time we rolled into our driveway at quarter past seven last night, my energy for blogging was long gone. Today I’ve been playing catch-up on writing deadlines. So with apologies for my tardiness, here’s the promised report from our latest trip to Denver: Richard got his second Avastin infusion yesterday morning. He seems to be tolerating the chemo and accompanying drugs pretty well; his energy levels, vision, and brain function continue to ever-so-gradually improve. It feels, in fact, like he’s getting closer to resuming a normal life, a miracle in itself.

For example, take Wednesday: In the morning, we headed to my dad’s place to help him out. While I was occupied with getting Dad started training the voice control program for his new iMac, Richard–with help from Molly–hung art on the still-bare walls of Dad’s new apartment. First, he had to find Dad’s hammer, which had gotten misplaced in the move. Then came the complicated information-processing choreography of hanging each piece: figuring out where it should go, centering it in the space, marking the spot for the hanger, hammering the hanger in place, and finally, hanging and leveling the art. The guy who couldn’t button his shirts three weeks ago got most of the big pieces and about half the smaller ones hung.

Randmolly

After helping my dad, we rewarded ourselves with a thoroughly decadent lunch at The Cheeky Monk, a Belgian bar/cafe that serves some of Richard’s favorite Belgian ales (most are half-price at lunch). After indulging ourselves in beer and frites and mussels and pasta, we headed to Denver Botanic Gardens to walk off lunch while looking at the exhibit of sculptures by Chircahua Apache artist Allan Houser. (In the photo above, Molly and Richard are listening to a curator talk about one of the sculptures via Molly’s iPhone.)

We spent a couple of hours wandering the gardens admiring sculpture and flowers before Richard wore out, right about when we had to take Molly to catch the bus to the airport for her flight home to San Francisco. Not only did he walk more than a mile, it was his first day without a nap in many weeks. That’s big progress to me. (My camera battery wore out before Richard did, so I didn’t get a shot of our favorite sculpture, “Looking Homeward,” but I did capture my favorite shrub, big sagebrush, with California poppies dancing in front of it, in the photo below.)

Sagebrushpoppies
Yesterday, during our four-hour stint in the infusion center, I thought about Richard’s recovery, and my unexpected career-change from writer to caregiver over these past two years. It hasn’t been easy, but early on I decided that minding his care–whether through surgeries or doctor consults, medications or meals–was something I could do to support the man I love in this unanticipated journey with brain cancer. I resolved to do it with a joyful heart and to be grateful for his company. I think I’m doing pretty well–not that I’m perfect, mind you.

I’m still struggling with my other caregiving role: supporting my legally blind dad as he learns to live on his own after my mother’s death. It’s not that I don’t love my dad; I do. I am also in awe of his determination to live his days cheerfully even without his companion of 58 years, and to do useful work. I know that he loves me and appreciates what I do for him. But honestly, I’ve got all I can handle with Richard’s care. It’s grueling to add a stint of dad-care to every trip for Richard’s cancer treatments, to sort out whatever problems have come up, to handle his legal affairs, to be his go-to person even though I live three hours away. I want to approach his care with the same cheerful heart he approaches every day with, but I haven’t gotten there yet.

Caregiverschoice

That realization sent me back to re-read  The Caregiver’s Choice, a book that novelist Elaine Long wrote in the years she cared for her husband and also her mother. The subtitle, “Find Strength and Serenity By Changing Your Mind,” may sound simplistic, but Long is too practical for that. She’s written a wise and personal look at what it means to be a mindful caregiver who cares for herself too, based on her own very difficult journey. Reading The Caregiver’s Choice is like inviting a friend over for tea, sympathy, and some tough love. You’ll be glad you did.

Caregiving is a humbling journey: It reminds me continually that I have a lot to learn. I guess we all do.

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