Sheep In Fog: My Summer Journey
There’s a new magnet on my cluttered refrigerator door.
A nurse, wearing blue — or were they green? — scrubs brought it to me last week. It’s a white magnet I never thought would find a home in my kitchen. With stark black lettering, it has a 24-hour phone number on it to hospice.
Yes, my mom — my very best friend, the woman who knows all my secrets, Thelma to my Louise — is sick with lung cancer. Before you ask because I know you’re thinking it, yes, she smoked for more than 30 years and quit in 1993. She was diagnosed with COPD several years ago, and she has managed it very well. Forever the fighter, at 85, this cancer that seemed to appear overnight will probably do her in. Writing this paragraph makes me cry.
An only child, I have decided to care for my mom at home until … well, until. I don’t want her in some sterile place with strangers helping her to the bathroom and wearing rubber gloves every time they touch her as if she is some alien species with a contagious disease. Instead, the doctor, understanding my wishes, called in home hospice to assist her and me.
I guess it shouldn’t surprise me that I’m doing this. Caring for family at home is in my genetics.
My grandmother took care of her mother for years as she battled a sore on her side that turned cancerous until she died in 1941. Back then, in rural Arkansas, a team of trained medical professionals didn’t exist and neither did many doctors or a Walgreen’s on every corner. My grandmother did whatever it took to care for my great-grandmother while raising five children and as many grandchildren.
Sadly, my grandmother didn’t get the same care that she gave her entire life. She died in a nursing home in 1976 because her family could never agree about her care after she had a stroke. They couldn’t even agree on a nursing home, and she was moved from a really good one to a mediocre one. My mother visited nearly every day and often would get up in the middle of the night and drive across Pine Bluff to make sure she was being cared for appropriately by the nurses. My grandmother never liked that nursing home and neither did I. I can’t blame her. It freaked me out as a kid, and I swore my parents would never be placed in one if I could help it.
I have a lot of my grandmother in me. Mom says so. Family should take care of family, and I don’t want any regrets haunting me when it comes to my mom.
But it’s strange, surreal and scary to be suddenly thrust into a new harrowing normal where the most independent person you have ever known is suddenly not any longer. Less than two months ago, Mom was walking without a cane and fully self-sufficient. That’s far from the case now as she needs round-the-clock help from me.
I know I’m not the first person to care for a parent or the first writer to write about caregiving. This isn’t even my first time dealing with a sick parent. My dad suffered from congestive heart failure and diabetes for years and died unexpectedly in 2009.
In 2015, my mother almost died after an incompetent nurse gave her a shot of morphine, which was listed as a drug allergy on her chart, when she was in the hospital for misdiagnosed pneumonia. (It was a sinus infection compounded by her COPD.)
She went into anaphylactic shock and was on death’s door for nearly a month in the ICU. But I had faith she would pull through because she was in top physical shape and she had a kickass fight in her. After two weeks of inpatient physical therapy, a month of home health care and four months of outpatient therapy, she rebounded beautifully.
Now, though, something is snatching away that spirit. She’s feeble — much more than she was in early May when I took her to the pulmonologist who initially diagnosed her with pneumonia and treated her with antibiotics.
The doctor wanted to perform a biopsy, but she refused because of her serious intolerance to anesthesia. Without that procedure, it’s hard to know 100 percent what she has so the doctor simply diagnosed her with a lung mass that is unable to be treated. Whatever it is, it is taking my mom away from me.
So I’m spending my summer much like I did in 2015 — being a caregiver. Except this time, without a miracle, she’s probably not going to get any better. I realize this and I try to forget about it. I try so hard to forget about it, but that realization looms.
Hours pass, and I find myself in complete denial that she will not improve as I prepare food, wash clothing, soak her swollen feet, help her to the bathroom, make sure she drinks her juices and Boost (She likes vanilla and strawberry), and fifty other things that consume my days that I have already forgotten.
Sometimes I straddle some line in my mind between the past — when Mom was well and we roadtripped throughout the South — to the future when she won’t be around to talk about politics or for me to show her something funny or stupid on social media or simply listen to me babble about my life.
Meanwhile, the present spins offering me no comfort at all. I’m without any direction, simply lost, a sheep in the fog as Sylvia Plath once wrote.
I wake up every morning hoping this is a nightmare but soon enough realize it isn’t. It’s reality. I try to make sense of it every day, sometimes every minute. All I can conclude is that this must have been what it was like for Princess Leia to realize her home planet of Alderaan had been blown to bits by the Death Star. What can I say? Star Wars offers comfort.
So does my beloved Duran Duran. Some days the band’s “Ordinary World” plays on an endless loop in my head especially one lyric:
What has happened to it all?
Crazy, some are saying
Where is the life that I recognize?
And it has. My world will never be the same as hospice workers pop in and out to check on my mom, asking about any new symptoms and offering new medicine. Tears bubble in my tired eyes every time one of them walks out the door, because they are leaving me alone — to be the adult in the room.
Mom often tells them that I’m the best daughter ever and she knows she is a burden. I reassure her repeatedly that she isn’t. She took care of me for years when I was sick with allergies, the worst case of chicken pox my pediatrician had ever seen, and crazy twists and turns with my thyroid problem. And God knows, she has listened to me talk endlessly for hours about life’s dramas — the highs and lows. So it’s my turn. I will care for her on this path I shall not name and do the best job I can even when I am so bleary-eyed and exhausted at three a.m. that I can’t even see straight and can’t tell you my name.
But I won’t cry because she tells me not to cry for her. That’s how brave, strong and full of grit and grace she is. Still. I’ve always been fearless as a journalist, but I’ve never faced anything as distressing in my personal life as watching my mom fade away. I only hope she is right. That I am tough, and I really did inherit her bravery on this unexpected journey in which I feel so terribly alone.