I Don’t Know Who I Am Anymore
Mom sat in her battered recliner. Her hands gripped the sides of her head, and tears flowed steadily downward as another TIA (Transient Ischemic Attack) rocked her. As the pain subsided, she whispered, “I don’t know who I am anymore.” She uttered the same phrase for several years as the world became a more bewildering and painful place to navigate.
There were no words or actions to dispel the reality of being lost in an unfamiliar place every minute, every day, every month, and every year. A long, unrelenting battle of being marooned inside yourself. Her constant companion was also her greatest enemy – Alzheimer’s.
My dad and I were her primary and secondary caregivers respectively, and we stepped into Mom’s world of confusion and bewilderment. We sometimes questioned our own sanity as we rode the chaotic waves of advanced dementia. Often, we would grab our heads, close our eyes, and say, “I just don’t know what to do anymore.” We kept our tears silent and hidden, so we could wipe away Mom’s. Those tears collected in a vast cavern of suppressed emotion as we struggled through every day. Or struggled through the one minute where our hearts broke in a thousand pieces as her life fell into a million shards.
On a Wednesday afternoon in early May, we suddenly realized, “we can’t do this anymore.” Two days later, Mom lay in a hospital bed in a nursing home only 15 minutes away. The overwhelming guilt of quitting battled with overwhelming exhaustion. Exhaustion won, and I felt a short-lived relief knowing Mom was okay.
We thought we would find rest with Mom in more professional hands, but we didn’t. We couldn’t sleep. My dad couldn’t eat, and I could not stop eating. We filled our days with nursing home visits and the mounds of paperwork associated with admitting someone into an extended care facility. We continued our caregiving. We fed her, took her for rides in her chair, read to her, and made ourselves well-known to the staff. We asked about her eating habits, sleep patterns, and bowel movements. Questions hospice asked us every day when Mom lived at home. Between the two of us, we visited her every day. Most of the time, we both visited with her.
Twenty days after Mom’s admittance, we received a midnight phone call. The hospice nurse said, “I will meet you at the nursing home.” My husband made the reluctant drive to Dad’s house to tell him the love of his life was gone. I walked into Mom’s room and stopped. “That’s not my mom,” I said to no one in particular. She was, and she wasn’t. She would never again hold her head in agony. Pain and confusion had fled and her face revealed youthful contours. The spirit that had battled for almost twenty years against a formidable enemy had finally found rest.
Funeral arrangements, family, friends, and everything associated with death filled our days and weeks. Financial matters took two months to complete when the insurance policy ran into a glitch. Then, silence. No caregiving, no running to the nursing home, no one to feed or walk. No body wash to buy or hospice care visits. Medical equipment vanished in a day. All gone.
Oddly, the rest and restoration our bodies craved eluded us in grief. Into the silence, the vast cavern of tears wended their ways to our eyes. We couldn’t sleep, eat, or think. We sought silence when words became too painful to utter. We put on a survival façade for the world to see. Then, unexpectedly, these words broke from my lips, “I don’t know who I am anymore.”
Once, I was the daughter, the secondary caregiver of a Mom with Alzheimer’s. In single moment of respiratory failure, I ceased to be Mom’s daughter and a caregiver. I am at a loss to discover how to fill the void. I am at a loss to discover what my purpose is now. Sometimes, I look for other caregiving opportunities, but the trauma of the last one keeps me away.
My journey to find identity is strewn with various projects, but nothing answers the quest within me. A couple of things I do know. There is a cavern of tears waiting to be shed, a healing of emotions to be experienced, and exhaustion to be overcome. For now, I go through the motions of living. It is enough.