A Caregiver's Trek Through Insanity

In June of 2000, the call center where I had been employed for nine years announced that they would be closing their doors by the end of the year. The company began gradually rerouting the calls to an alternate center across the country in an attempt to make the transition as seamless as possible for their customers.

I was advised that my last day of work would be on October 15, 2000. The dangling carrot of a severance package kept me there until the bitter end. After the initial reeling, I rallied back to accept the inevitable and decided that it would be an ideal time to go back to school.
The world of graphic design was calling to me. I submitted a computer painting to a local foundation and was awarded a scholarship. The excitement over a future which seemed bright, challenging and promising mounted.

In August of that same year, my mother began experiencing excruciating daily headaches. Believing they were migraines, she attempted to treat them with over the counter remedies for quite some time. As the headaches grew in frequency and intensity, the relentless pain demanded that she see her primary care doctor. He referred her to an Ear, Nose and Throat specialist to rule out possible sinus issues. 

I was with her when the words were spoken, when our world grew silent, still and gray.
"The MRI... a mass... a tumor... in your brain..."

A visit with another specialist, a Neurosurgeon, offered some hope as he set the surgical date.  ”The tumor may actually be benign."  My siblings flew in from various parts of the country to join me and my adult children in the surgical waiting room. Intoxicated with optimism, we laughed and joked, eager to hear what each had been doing since the last time we were all together. 

After some time, the surgeon brought sobering news. We sat in stunned silence as he relayed the information that the tumor, although successfully removed, was actually a metastasized tumor from a secondary site.  He gently gave us the new diagnosis. "Your mother has small cell lung cancer. There is a long, difficult road ahead of her."

The divine timing of the layoff and my mother's considerable medical needs could not be ignored when the family caucus convened.  I wrenched the longing to pursue my personal dreams of school and a recently rekindled relationship to a wonderful man from the depths of my soul. I reluctantly... despairingly... accepted my appointed role as my mother's caregiver.

Two years before her diagnosis, my younger brother attempted to end his life in the cold, lonely womb of a cement culvert. Falsely fortified with liquid courage from a fifth of Jack Daniels, he took with him a mayonnaise jar filled with gasoline and a book of matches to permanently eradicate the searing emotional pain of alcoholism and serious mental illness.

Two men saw the smoke from what they assumed was a brush fire and called 911. My brother was rushed to the burn unit at a local hospital, placed in a drug induced coma and put on life support. A partial fingerprint lifted from his charred hand and a former police record provided the avenue for law enforcement to identify him and in turn locate my mother. 

After reaching the anguishing decision to remove life support, my mother and I said our final goodbyes. He passed quickly and peacefully according to the compassionate nurse who stayed with him when our fragile emotions persuaded us that we could not.  In the months following my brother's death, my mother’s understandable inability to emotionally reconcile our decision to remove life support clashed with my equally understandable unwillingness to revisit and defend that decision time and time again. As a result, our relationship had eroded significantly. Now fully convinced that the journey before us was divinely ordained, we both set out hopefully.

My preconceived agenda of long meaningful conversations to right our painful past was thwarted when auditory tests confirmed that hearing aids would not be effective in helping with the rare side effect that followed her very first chemotherapy treatment. She was suddenly plunged into a world of distorted, desolate silence and I fell into the whirling cesspool of resentment, fear and self-pity.

An all-consuming burning guilt joined the dark forces and the small voice of reason was silenced in the thunderous avalanche of racing thoughts and powerful, frightening emotions. I was free-falling. I never knew which thoughts to cling to as I lost the ability to differentiate the strong, steadfast branches of truth from the brittle twigs of lies and deceit. Faith abandoned me. Fear and paranoia seized me. 

Recovery from insanity is a slow, painful, arduous process. Trudging the long snaking path through menacing shadows of despair, valleys of depression and mountains of fear, the trek was all the more lonely in the knowledge that no one could guide me to safety through the internal emotional abyss. This despondency was mine and mine alone to overcome. The perception that I would be completely consumed by the darkness loomed large in light of my brother’s long unsuccessful battle with mental illness.

Armed with several tricyclic and psychotropic medications after a short inpatient stay in the locked psychiatric ward at a local hospital, I began the laborious passage from darkness to light. The steadfast support of my fiancé, friends and family encouraged my impoverished spirit. Remarkably, I emerged from the great emotional divide relatively unscathed.

When we received the sad news that the cancer treatments had failed and were being aborted, completion of the divinely appointed caregiving task became personally paramount. I now realized that the burden was far too heavy to carry alone so I began reaching out more to family and friends. I joined a caregivers' support group where I met others who shared similar emotions and experiences. They offered sound, practical advice on how to overcome the challenges of balancing self-care while caring for others.

Resentment, fear and self-pity periodically threatened to  ensnare me; however, the powerful prayer "Thy will, not mine, be done" whispered fervently, reverently and repeatedly held them at bay. I was graced with renewed faith which led to acceptance and strength. I began to embrace my altered life, one day at a time, without expectations. I cherished the limited time that my mother and I had left.

It was in February, the second month of the second year of the new millennium and just two days before she lapsed into a death coma, when the miracle happened.  As I lay on her double bed in her bedroom staring blankly at the ceiling, my mother's anguished voice rose feebly from the rented hospital bed across the room.

"I feel like I want to cry.” 

The world was still, silent. It seemed that the heavens had bowed down to listen.

"Mom, you can cry if you want to. It’s okay for you to cry.” 

Due to the hearing issue, I was genuinely surprised when she responded tearfully and appreciatively. 

“No one has ever told me that it's okay for me to cry.”

And then, she cried.

Hot tears spilled over the loss of her husband, my father and the vicious irony that the small cell cancer that had taken him from us sixteen years earlier had returned with the intention of stealing her away this time.

She mourned the loss of her eldest son, shedding searing, bitter tears over the heart-wrenching fact that he chose to end the life that she had birthed.  She bewailed the cruel notion that the decision to turn off life support had somehow made her an accomplice in his death.

She languished over having to leave her children, grandchildren and her first great-grandchild who had come into this world just two months before cancer came into hers.

Vacillating between the desire to remain and the desire to surrender, she wept through the fearful considerations of all that might be required of her with either scenario.

We wept. Together. Our sacred tears filled the relational chasm and soothed our parched souls.