Alphabet list of caregiver tips
Being a caregiver was one of the most challenging and sweetest roles I’ve ever held. The challenging part was in the beginning, when terminal cancer was dropped on us from a high-flying bomber we didn’t see coming.
A year later—after my husband, Gary, finally admitted his fears and feelings of failure as a man—we sorted things out, determined to live more fully, found ways to give back, and made more fun and memories. That was the thunderous, sweet, majestic part.
If given the assignment to share tips from my cancer caregiving years, and if the assignment required an alphabetized list …
… it would look something like this (you’re gonna have to work with me on a couple of these):
None of us are exempt. But we get to choose how we live with and beyond the diagnosis, the heartbreak, the loss of an irreplaceable person.
After starting chemo, Gary decided he would go bald on his own terms. Our niece was assigned the job of shaving his head. But first, a little fun: An Oregon Ducks “O” was sculpted on the back of his head in anticipation of the afternoon’s football game.
The best thing I did as caregiver was come alongside Gary — not sitting in the bleachers cheering him on, but in the game with him, running interference, picking him up when he got tackled.
There are too many sudden, tragic, senseless deaths. But standing watch as a loved one dies can be a sacred and sweetly sorrowful occasion with patient and caregiver saturated in peace that defies all human comprehension. I know this from experience.
As the doctors were honest with us about the approach of death and their goal to keep Gary comfortable, there was a lighter spirit in my husband. End-of-life discussions are essential.
Our faith helped us weather the hard road. Yes, we struggled with self-pity, anxiety, frustration. If there hadn’t been a sense of purpose that eventually settled over us, this journey would have been devastating. And yet it wasn’t. In its place was meaning and deep peace. Because Jesus Christ was central to the equation.
Gary and I could count our losses. Or we could count what still remained. And the list of what remained was quite long: our marriage, our kids and grands, extended family and friends, a place called home, one more day together.
“If you didn’t get your hopes up so high, you wouldn’t be so disappointed,” said the analytical, computer-geek man I married. But I love that he matched my hope during the cancer years.
Cancer ignited a passion to live our remaining days in a way that mattered, and to encourage others to do the same.
I learned to slow down and pick up simple things that could be enjoyed in the same room with the man in the hospital bed – a good book, knitting, playing Words with Friends. Quite an accomplishment for someone who gets her sense of worth from her accomplishments (pun intended).
A chain bearing two small sterling silver tags is my most prized piece of jewelry. The tags are engraved in Hubby’s chicken scratch handwriting: “I love you.” They remind me that I was once loved by a most courageous, kind, wry-humored man.
Cancer prodded us to explore the red canyons of Utah; navigate the NYC subway system; discover New England’s back roads during leaf season; laugh from mountaintops in Oregon, Wyoming, Colorado. It probably should go without saying that we ought to live while we have life.
I scattered my husband’s ashes at the top of a favorite trail. Ceremony. It’s not something we invent to mark milestones; it’s critical for remembering this moment, cherishing this story, celebrating this life.
Getting outdoors helped us deal with the stress of cancer. There’s nothing like summiting a mountain, or hiking a burbling stream for a sense of well-being.
Hubby was the analytical sort who first saw all that could go wrong. He called himself a realist. “No, honey, you’re a pessimist.” He’d grin his cute grin and meet me halfway: “OK, I’m a realistic pessimist.” When it came to cancer, though, I loved that my realistic pessimist husband faced it with optimism.
Gary and I didn’t think we should sit back and hope cancer treatment was all he needed. We were a proactive, engaged team, and it made a difference in his quality of life.
Quality of life
Gary lived several years longer than originally projected, and those years were incredible for someone with a terminal diagnosis. He often said, “It’s up to me how I’m going to live the rest of my life.”
We established a non-profit, drafted a tag-team presentation, and dared to think there would be audiences across the country who would be interested in our proactive message. Risky.
This from Jim McMahon, pro football player:
Risk-taking is inherently failure prone. Otherwise, it would be called sure-thing-taking.
I would never wish our wilderness journey on anyone. But because of the hard road, I am kinder. More compassionate. I carry stronger faith. I spend more time noticing the wealth of blessings that make up my ordinary days. And quite frankly, I like this person better.
It takes a full team to win championships. Not only did we have a full cancer team comprised of good nutrition, stress management and finding meaning, but we had a team of unstoppable people who helped carry our load.
Two co-workers came to visit one day. We chatted, Gary in his hospital bed, my girlfriends sunk into the sofa. After a while, one of them said, “It’s so peaceful here.” Does that strike you as odd? We’re sitting in a room with a man dying of cancer and my friends linger long because it’s peaceful.
Gary and I combined our skills and passions to establish purpose. But what happens when the dream dies with a loved one? Here’s the blazing answer: The vision can be repurposed to accompany the new season.
“Doesn’t this get monotonous?” Gary asked one morning after I changed his dressings, drained his bags, flushed his tubes. No, never my darling. He knew I loved doing life with him. He knew because I told him. Frequently. Words are powerful.
If your physician isn’t on your team, it’s time to replace him.
Yes, thank you.
Hubby’s cancer (and our daughter) taught me to say, Yes, thank you. “Mom, people want to help in meaningful ways,” lectured Daughter Summer. “You need to let them.”
There are a zillion good things that came out of the hard. If Gary hadn’t been unemployed, for example, I wouldn’t have given up my work at a non-profit and eventually been hired at the cancer center. And we wouldn’t have met so many kind-hearted, enthusiastic, generous co-workers and community members who surrounded us with compassion in those last months of Gary’s life. And that’s just one of a zillion good things.
Ironically, the last years of our marriage were the best. Because we planned more fun and adventure. We took more risks, stepping in front of audiences to share our story. We paid attention to the moments that made up a good life, even with cancer in the picture.
Now as widow, I’m still living what was our unofficial dealing-with-cancer mantra:
Relish this moment. Drink in this simple joy. Whisper gratitude.
P.S. If you know a caregiver who could use some encouragement, please share, tweet or pin!