I wrote a book about being a caregiver for my husband. It (sort of) became a bestseller.
When Caring for a Cancer-Stricken Spouse Feels Like a Curse
When an adult is diagnosed with cancer, it is often the case that a huge amount of responsibility is suddenly and unceremoniously heaped upon the shoulders of the sick person’s spouse or partner.
The illness itself, as well as the new role of “Spousal Cancer Caregiver” can sometimes feel like a curse.
Of course, it isn’t!
That’s what this book is all about.
Facing Cancer as a Younger Family, with Children Still Living at Home
For married couples in their thirties and forties, especially those with children still young enough to live at home, the spouse of the person with cancer must navigate an incredibly challenging path. They are required to take on a new role which entails ceaseless work — work which, though rigorous, valuable and skill-intensive, is usually also unpaid and unacknowledged.
The sick spouse is often far too ill to notice, or to worry about anything but their own important healing, understandably so.
Everyone in the extended family network, as well as the medical community, becomes (rightfully) focused on the cancer patient.
Meanwhile, the spousal cancer caregiver, or “SCC,” is dropped into a churning ocean of chaos — far from shore — to either sink or swim like mad without a life vest, and no one even sees their mad flailing in the periphery.
Taking on the Roles of Family Nurse/ Medic, Psychologist, Nutritionist, and Solitary Breadwinner
The SCC is tasked with so much.
First, the obvious. He or she must tend and clean their spouse’s post-surgical wound dressings, apply ointments and bandages, change TPN and/ or ostomy bags, flush IV lines, keep track of and administer medications, pick up said medications from pharmacy, wash and change soiled laundry and bedding, organize and drive their ill spouse to a nonstop flurry of appointments (scans, ER visits, oncologists’ appointments, specialist visits)… the list of medically-oriented tasks goes on.
Then, the not-so-obvious. As the only healthy adult in the household, the caregiver will, naturally, do everything in their power to provide emotional support to their ailing spouse, as well as to the children they love.
The SCC must somehow get to the grocery store often enough to keep the refrigerator and pantry stocked, while still finding time and energy to prepare the entire family’s meals on a daily basis.
But it doesn’t end there.
Someone must earn the money to feed the family, and that someone is — who else? — the SCC.
Even if emergency food benefits are granted, they are not nearly enough to feed a family with growing kids and teens.
In addition, there are still bills to be paid (cancer medical bills, hello!) and expenses to cover.
Social security disability, while a godsend once approved, often takes two years to come through, and that is if the family has the time and resources to go to battle with the gatekeepers of this strangely prohibitive, denial-prone US safety net, which seems to actually “catch” hardly anyone in the first crucial years of a serious health crisis.
(In our case, we eventually found an attorney group to do battle on our behalf, but even getting the attorneys to accept us as their client was a lengthy and challenging ordeal. Your author could clearly see that not every family in a true health crisis situation will realistically have access to competent legal representation. The fact that a family should even need to go to such lengths to receive disability benefits, seems astoundingly cruel in the author’s eyes.)
So, in the painfully long interim between the onset of disabling illness and the appearance of any sort of legitimate safety net, the SCC must hold down a paying job.
For some, this might mean entering the workforce for the very first time, or reentering it after years away.
Feeling anxious and concerned for their beloved (and their kids) every hour of every day, this can be a scary prospect.
Due to ever-increasing, crushing financial stress, the already-overwhelmed SCC is called upon to work more and more outside the home.
In spite of personal and family time already being in insanely short supply, SCCs are forced to leave vulnerable children and infirm spouse at home, to fend for themselves while s/he goes off to earn money.
During the hardest and scariest period of a family’s life, the SCC must suit up and leave the ones they crave precious time with most, in order to keep the family from going hungry or becoming homeless.
The SCC may even sense that their spouse or loved one, tragically, doesn’t have much time left on this earth — but still, will have to leave them many days of the week, to go and “earn”.
A Unique Strain of Loneliness
The SCC often chooses not to talk about his or her own increased stress levels with their cancer-stricken loved one.
Directly communicating such feelings to their beloved former confidant in all things, now that this person faces a life-threatening disease, would neither aid nor comfort either.
Having no one, not even his or her soulmate, with whom it is appropriate to share the intense gamut of emotions that arise, the SCC often finds him or herself suffering from a unique strain of loneliness and anxiety that few outsiders can understand.
Relatively Young Cancer Caregivers, Who Are Also Parenting Children or Teens, Face Specific Issues
Written by the wife of a cancer patient diagnosed at 46, and mother of three (two teenagers and an eleven-year-old), this book offers ideas, strategies and tips to help other “younger” cancer caregivers who are parenting children still living in the home.
With practical tips and suggestions to help cope, as well as ways to improve one’s mood and outlook in a healthy manner, this book was written to help SCCs rediscover the many ways in which joy can still be found.
In addition, the book discusses authentic, healthy, loving ideas on how to talk about a parent’s cancer with kids.
Whether our spouses will respond well to their treatment and enjoy the remission we all hope and pray for is unknowable.
Still, we can find inventive ways to lighten the load on all of our souls and lift the “curse” that seems to have befallen our families.
Because every little bit of support helps during a crisis, a jam-packed Resources section has been included at the end of the book to provide information about helpful organizations, websites, and discoveries that the author has made in the years since her husband’s cancer journey began.
Breaking the Caregiver’s Curse: Rediscovering Joy in Life’s Most Difficult Season hit #2 in its category on the Amazon Bestsellers list!
Lumina Loveday is a yoga teacher, meditator, wife, and mom to three humans and two rescue dogs. At the age of ten, Lumina was given her first typewriter as a gift from her grandparents. It was a big, clunky Underwood. To write her first “books” (which were always about unicorns of course), she had to press the keys really hard, but she didn’t mind. Perhaps Lumina’s grandparents, who were avid readers back in the 20th century, had a hunch about her writerly tendencies. Lumina lives with her family in Las Vegas, Nevada.
Originally published at heartsunyoga.com on July 6, 2019.