by Kate Farrell
I’ve Got This…
This month of March marks our 16th year of Multiple Myeloma action. That’s a long time….a lot of “action.” But of course, we didn’t know that when my husband, Doug, was first diagnosed. Early on the future was very uncertain. We did know that a cancer diagnosis was deadly serious. And myeloma was not curable.
And I, a nurse by profession, was prepared to go full-on catastrophic caregiver mode. I could and would record all the lab results, watch for trends, schedule appointments, serve blueberries (antioxidant superfood) every chance I got, decrease stress, let him pick the movie and pizza toppings, not complain about his leaving the seat up, communicate updates to our three young adult children and……….you get the idea.
Several months into this new way of being, we attended our first myeloma patient and family seminar. Several hundred people and a handful of top docs. I signed on for the breakout sessions concerning bone health, new therapies and stem cell transplant. I rolled my eyes at a session for caregivers. Are you kidding? What would they tell me? Ask for help, take time for yourself, read a book, exercise, eat well etc etc. I knew all that. I needed to know the cancer specifics.
Maybe I Don’t…
It was my husband, who suggested we should go to a support group. He’d be with the patients and me with other caregivers. Of course, I said yes. I saw my role as providing whatever he needed. After our initial intake together, where we both became teary, we entered our separate rooms to meet our individual group. Looking back on that it could have been my initial awareness that we were on different paths.
As a happily married couple for over 25 years, we had together supported our careers, bought a home or two, had babies, raised school-aged children, worried about teens, planned financially, cared for aging parents, envisioned retirement. Most of the time on the same page, in lockstep.
This development, this cancer diagnosis turned that on its head. We had in a way lost our innocence. Doug had multiple myeloma. I did not
I Need A Care Plan…
So there over the next several weeks with the wise guidance of an oncology social worker, and the sharing of souls, who were caregivers of various lengths of time, I came to understand that although I could easily list what caregivers “needed”, a deeper exploration of our separate journeys begged to be understood.
So how as a “caregiver” do you know you’re offering the care that is needed? And not giving the “help” that as wise writer Anne Lamott has warned may be “the sunny side of control.” There was a lot that I wanted to control. I did not want our story to end with multiple myeloma. I know that in the early days I wanted to believe that whatever I could do, whether serving lots of blueberries or creating spreadsheets of lab results, that those acts of love could control the outcome. Did Doug even like blueberries? So what’s a caregiver to do?
It has always struck me as easier said than done. When on an airplane you are told to put your own oxygen mask on first before assisting others. More from Anne Lamott.
“Radical self care is quantum. And radiates into the atmosphere like a little fresh air. It is a huge gift to the world.”
Wow! This sounded to me like a lot more than just asking for help, etc. Although, I am certain that the reason it sounded different was that I was now standing better balanced. My full catastrophic care mode would not have been sustainable. To have continued with that unbridled “caregiving” would have been a disaster and disrespectful. Doug needed to be Doug. And I needed to take a “chill pill” or at least a deep breath. I am so grateful to have had that epiphany from my caregivers support group.
We’ve Got This…
Sixteen years later with more perspective. The caregiver learning curve stills curves and falls back on itself. There are rare nights I don’t sleep well because of the “what ifs.” I won’t say that there aren’t times when I am tempted to start a sentence with “well if I had myeloma, I would (fill in the blank)”, but seldom do. You can’t argue with success. Doug’s journey with myeloma has included wonderful accomplishments that have nothing to do with myeloma and everything to do with Doug and maybe some wise caregiving. Besides I’d rather spend time planning birthday gifts for grandchildren, doing my pottery, reading a book, practicing mindfulness. I am acutely aware that despite this huge Philly-like pothole in our life’s journey, it is because of this self-care coupled with the love of family and friends that we thrive.
There is no lack of opportunity for caregivers in our disparate world. So let’s get out there when we can, but remember to put your oxygen mask on first. One more thing…..Doug likes blueberries but he loves baseball.
Kate Farrell and her husband, Doug, live in West Philadelphia. They have 3 children and 4 grandchildren all living in and caring for this City of Brotherly Love and Sisterly Affection. She is a member of the Philadelphia Multiple Myeloma Networking Group. www.philadelphia.myeloma.org.