Confessions of a guilty widow
If I confess my deepest darkest regret, will you think less of me? Will the colorful image you had of my character fade to gray?
I guess I really can’t be concerned with such matters. The need to be authentic compels me to admit:
During the last months of my husband’s life, I was a wretched wife.
When your spouse is diagnosed with cancer, a halo is promptly bestowed upon your head. People behold the aura of an angel, a selfless guardian.
The moment your beloved dies, you are bequeathed sainthood. No canonization investigation required — you’re decreed a living martyr.
I wasn’t worthy of either title.
For years, I was able to pull it off
From that fateful day in 2001 when his leukemia was detected and throughout the stem cell transplant in 2003, I was my husband’s fierce warrior — his faithful companion.
I eagerly attended every doctor’s appointment. During the transplant, I sat by his hospital bed with my notebook of lab results, daily stats, and Q&As for the attendings. I kept track of how many ounces he drank — and expelled. I’d help him shower if he had the energy to take one and especially when he didn’t.
For eight weeks, I monitored and worried. His steadfast sentry, nothing was going to be missed on my watch.
The 45-minute drive home each night was my time to cry — that is, if I could allow myself the release. Gasping sobs would have to wait. One can only shed so many tears when navigating a freeway.
Our two young sons, ages eight and ten, would greet me at the door, anxious for news about when their Daddy — their hero — might come home. I never had the heart to tell them the odds were he wouldn’t.
Once he was released from the hospital, the location had changed, but the vigil continued. He was in lockdown for 100 days while his immunities were rebuilding. Every morsel of food and drink was strictly controlled to prevent contamination. I flushed his Hickman twice daily so we wouldn’t need to hire a nurse.
My husband’s only excursions were visits to the doctor, where I diligently came prepared with my ever-expanding notebook. I reported on his progress and tattled on him when he “misbehaved.”
Part scolding, part admiration, the three of us would laugh and cry, smile and cringe about the pace of his recovery.
Throughout it all, he would hold my hand and thank me. Silently sing my praises with a sly smile. I would soak it all in — letting his pride in me briefly douse the dread simmering in my soul.
I was a triumphant wife.
Reality settles in
We soon learned the harsh reality of “surviving” a stem cell transplant. Remission does not equal well. It only means cancer-free.
When they bring you to the precipice of death, there are going to be consequences.
My husband was in a ceaseless war. His immune system had been overthrown by the transplant and it wasn’t going to give up without a fight. Every skirmish left a little more devastation in its wake. His body was the battered battleground.
As he bravely soldiered on, I slowly withdrew. I continued the day-to-day activities of being a wife and mother, but I retreated from us — from him.
I was a fraudulent wife.
I was repulsed not by him, but by the disease slowly taking him away from me.
Every ailment withered his physique, but strengthened his resolve. The more he suffered without complaint, the more I wanted to scream about the injustice of his illness. I seethed with selfish anger and writhed in empathetic pain.
The two of us continued on in a stoic hush, not wanting the world — or each other — to realize just how fragile we were.
Not comprehending that isolating our feelings would soon isolate us from each other.
I could handle much of it: the perpetual sores on his feet that he spent 30 minutes each morning dressing, the near loss of his vision requiring contacts only available across the country, and the limp that took stole his weekly game of basketball.
It was the rest that made me go AWOL
First, it was his drastic drop in weight. I used to joke I didn’t marry a man who was thinner than me, playing on his ego to try and get him to eat. But that was only the truth floating on the surface. From the center of my being, I ached for his strong, muscular arms that would make me feel safe and protected.
Each pound he lost tolled how precarious our life had become. He finally stopped telling me his weight. I would never ask again.
Doubly desolating was the siege of his mouth. Dry and full of sores, he couldn’t muster enough saliva to eat normal food nor tolerate any sort of spice. Nearly every meal I could make caused him pain. When he stopped joining us for dinner, I gave up on cooking.
No amount of breath mints could disguise the scent and flavor of sickness inhabiting his mouth. The mouth that gave me my first kiss. The one I used to spend hours savoring was now sour — a distasteful reminder of a life being vanquished. Our affection became relegated to pecks on the cheek.
He developed a form of scleroderma. The condition marched across his skin, laying the foundations for its eventual sarcophagus. Disfiguring and immobilizing everywhere it advanced, we knew it was only a matter of time before it hit below the belt.
I was a neglectful wife
Each night, my husband would retreat to our bedroom soon after dinner. A full day’s work for him was exhausting. After the kids were put to bed, he’d ask me to join him. Sometimes for intimacy, mostly for simple companionship.
To my profound regret, more and more often, I’d come up with a reason to decline his request.
From “I’ve got a headache,” to “There are bills to pay,” to “My favorite TV show is on,” I guiltily spouted them all. Dejected, he eventually stopped asking.
My love for him never wavered, but truth be told, I was resentful, morose, and a sad excuse for a wife. I fumed that every waking moment was dictated by his disease. Embittered that our children didn’t remember life with him well.
I was despondent over being robbed of our happily ever after, even as I was robbing him of the closeness he needed — and deserved.
I was in mourning before he was dead.
It never occurred to me I was suffering from depression.
The other shoe drops
For seven years, the WHEN? shadowed us during the day and loomed in our dreams at night. We tried to pretend it wasn’t there, but it haunted us all the same.
His death brought forth a cavalcade of emotions: Shock, sorrow, and deep-seated anguish that left me hollow. It also brought relief. Relief that he wouldn’t have to endure another minute of suffering. Relief that cancer no longer ruled our lives.
Relief that I didn’t have to take care of him anymore.
Then the guilt would wash over me like Bactine. I would sting mightily with shame and then go numb.
I was a grieving widow.
Clarity comes in the aftermath
It’s been 12 years since he’s been gone. A dozen years living with this secret disgrace.
I’ve chastised myself a thousand times for falling short. Remorse still prowls my cheerful memories, waiting to pounce and condemn.
Only recently have I acknowledged I was depressed. The years of “being strong” had left me weak. There were only so many hours in the day I could keep a smile on my face. I was also suffering from an autoimmune disorder that sucked dry any reserves I may have had.
Desperately working with my meager coping skills and failing miserably, I simply thought this was par for the course when confronted with cancer. Too dumbfounded to recognize that I needed — we both needed — help.
I was doing my best, but I know it must have hurt him deeply. If I could change one thing, I would have swallowed my pride and reached out to someone.
Maybe then, I could have settled into his embrace each and every night of those last months. Let him kiss me like he did our first time under the mistletoe.
Remind him — remind me — that our love could soothe all wounds.
Cancer caregivers experience depression at more than double the rate of patients
The American Society of Clinical Oncology reports that up to 59% of cancer patient caregivers experience some sort of depression, compared to up to 25% for patients. Continual, untreated caregiver burden can negatively impact the health of the caregiver as well as the patient.
If you are a cancer patient caregiver and feeling overwhelmed, please don’t keep it to yourself.
Most cancer centers will have an oncology social worker on staff that can direct you to nearby resources. Seek out support groups where you can express your anxiety in a safe space. Check out the National Cancer Institute’s Caring for the Caregiver.
Getting assistance will only help you — and your loved one.
This piece was originally published as an P.S. I Love You Editor’s pick on Medium.com