|Mama Jude and Me (20-something years ago)|
I turned 30 this past April, something I find myself embarrassingly admitting lately. It’s what I find most isolating about being a young caregiver ― the young part. It seems most everyone else I meet caring for a parent is about 20 years my senior (of course, this means they carry 20 years more baggage, but it also means they’re a lot more likely to have a spouse and children to/for support). It’s all happening too early. She had only just retired and we were just getting to really enjoy each other’s company as adults.
I’m an only child, but I was raised by a single mom, which I think cancels out the stereotypical, spoiled only-child effect. Unfortunately, it also means there’s no one else “supposed” to help me, no immediate family for the day-to-day caregiving work. The struggles I witnessed as the only child of a single parent are now repeating themselves in a sad reversal (overall, terminal illness seems to turn up the knob on family dysfunction ― and if you think your family isn’t dysfunctional, you’re probably lying to yourself. Welcome to denial. We’re all dysfunctional on some level). Cancer seems to bring out both the best and the worst in people.
|Enjoying Shakespeare Santa Cruz|
Friends my age who are caring for another person are typically new parents. The realities of caring for a parent are very different from caring for children (though I don’t yet have my own children, throughout college I worked as a Los Angeles-area nanny.. aka full-on parenting). Perhaps it’s the size factor (you know, small child vs grown caring for the same size parent). Or that the parent was once ― at least, in theory, and in the case of solid parenting (like Mama’s) ― in charge. This makes the role reversal a constant struggle.
The Brain Difference
The stress of that flipped relationship is further intensified when you add brain cancer to the mix. Having cancer in the part of your body that controls your entire body, being, perception and thoughts can mean personality changes, confusion, worsening short-term-memory loss, disorientation, mood swings and cognitive slowing. Part of what makes this heartbreaking is that Mama is completely aware of her diminishing capacity. Mama has always been an incredibly sharp, AMAZING woman and it is so hard for her to realize that she can’t do all that she once did.
|Mama Jude and Me|
The reality of Mama’s rare brain cancer is that she’s dying. Yes, we’re all dying. But it’s more than a concept in our house. It’s a reality we fight constantly, daily. Facing one’s mortality is scary, but to have that permeate each day, to be reminded of one’s own limitations and previous sharpness is a cruel decline. Though my Mama will turn 70 on her big Last Wish Trip to Venice, Italy, she always had a lively spirit and seemed years younger. We simply haven’t had enough time yet together. I still need my Mama for some big life events. And, this may sound silly, but she’s always been the one person who truly cares how my day went.
An old friend and colleague recently asked me how I learned to be my Mama’s Caregiver. I honestly didn’t know what to say. In my mind, there was no question. I simply needed to step up to the challenge and maximize my Mama’s quality of life as best I could.
Daughter As Caregiver
|Mama’s recent home manicure|
Caring for a parent doesn’t just mean I hang out with my Mama all day. Being a caregiver for a parent involves unlimited roles (and the ultimate adaptability and patience): Patient advocate, an absolute necessity at Kaiser; disease management (record & report symptoms, research & recall disease info) and medication organizer and administrator (plus homeopathic remedies for cancer symptoms expert); personal chef and cancer-fighting diet expert (now specializing in plant-based meals); insurance battler, financial administrator and overall power-of-attorney and issue tackler; personal trainer and physical therapist; personal assistant (calendar, appointment scheduler, errand runner, etc.); home cleaner and DIY fixer, plumber, personal driver (Mama isn’t allowed to drive anymore) and so much more. As her daughter, I find my “girly” skills are an added bonus, as I give her “cancer haircuts,” face masks, gel manicures and pedicures (see photo), eyebrow shaping, makeup advice, style and plenty more.
I’m the person who finds things, remembers things, and minimizes any possible foreseeable issues. It’s a constant juggle… loving daughter, stern caregiver, and supportive friend (her buddy, she likes to say).
|Mama Earns M.A. in Instructional Design|
“If you were a normal girl, you’d hate me,” Mama Jude earnestly told me the other day and looked away, holding back tears. It broke my heart.
With all of this happening in our own little world, I sometimes I feel as isolated as if I were down in Mexico, not just 1.5 hours south of San Francisco. Cancer isn’t contagious, but I worry the accompanying sadness might rub off. There’s a surprising layer of sadness as some of the friends who previously made up your world distance themselves. Though recently opening up about the realities of our world has brought immeasurable support from friends old, new, distant and close. Like a whirlwind spinning on without us, the rest of the world seems to move faster anyhow. Our little world has been primarily paralyzed… waiting, though we know not for what. As Facebook-voyeurs, we cyber-stalk the engagements, weddings, births, promotions, travels and assorted exciting, wonderful life events of our family, friends and acquaintances. A former news junkie (a journalism school requirement), I’m ashamed to admit I now get most of my news through Facebook and Jon Stewart’s Daily Show!
Everyone asks, what am I doing to care for myself? As if there’s something that could really make me feel better. Seriously? Look at my reality. It’s been an unsteady, upwardish path from far from OK. I’m coping. I’m surviving. And yeah, I’m taking care of myself. Seriously, I am. I regularly(ish) exercise, eat a moderate and (mostly) good diet, take happy pills for anxiety, go to a loved ones cancer support group and make attempts at quality sleep. I stretch and take relaxing bubble baths and cuddle my beloved, healing dog. Though to be honest, I’ve fallen down in my own “30 Days to 30” goals of establishing new and better habits. Personal and financial issues were put on hold, but my lifelong struggle with weight has become less difficult as I’ve somehow lost my hunger but discovered Jillian Michaels’ Shred It With Weight workout video (of course, now I’ve got a wonderful and new problem of my clothes swimming on me). As I take each day at a time, I consider that perhaps productivity is overrated.
|Mama Jude and Me at Gaudi’s Park Guell in Barcelona|
Yet my focus now is making Mama’s Last Wish a wonderful reality. This September, we’ll be traveling to Mama Jude’s beloved Venice, Italy, where we’ve rented a beautiful Gran Canal apartment for 4 weeks! We are completely blown away by the generous donations of friends and strangers; and we are so incredibly grateful for the support and encouragement during this most difficult time. We look forward to celebrating our big travel plans with friends and supporters at our “Screw Brain Cancer, We’re Going to Venice, Italy” Buon Viaggio BBQ Celebration next weekend.