Mourning a person who is still living is a sad and surreal experience. I’ve had my fair share of grief as a caregiver for a person with Alzheimer’s disease. My emotions have ranged from feelings of abandonment to denial and guilt.
Being the sole caregiver for Mom as she battled terminal uterine cancer along with Alzheimer’s was the hardest thing that I have ever done. I often felt alone, and I was. My feelings of abandonment were not merely because I did not have enough family support, but also because my mom was leaving me little by little every day. She was heartbroken, as was I, every time she was unable to complete a task with which she previously had no trouble. She was terrified of what was to come, and I was scared for her.
Mom and I would sometimes relish our denial as a means of coping with the inevitable. As her dementia progressed and a new cognitive challenge presented itself, we would alter our routine to accommodate and embrace our new normal. Then a period of denial would ensue until the next dreaded revelation, courtesy of Alzheimer’s.
Guilt seemed to be a never-ending story that manifested itself in many ways during my time as a caregiver. Mom would sometimes pray for God to end her suffering while I was selfishly praying for her to stay “Mom” and alive as long as possible. I could not ask God to take her from me. The best that I could do was pray that she wouldn’t suffer.
I also felt guilty when I caught myself imagining life before mom’s diagnosis. I still had a desire to enjoy life and chase my dreams, but I couldn’t picture happier times because I knew that when I eventually went back to my life, it would be without my mom.
Mom persisted in playing the role of mother, pretending that she didn’t need help to protect me from the heartbreak of her progressive decline.
Even during the last few weeks when it was plain that she was entirely dependent on me, she went into mom-protection mode and tried with all her might to accomplish a task before letting me help her. She felt guilty that I was her caregiver, and I felt terrible that I could do nothing about her inevitable death except to love and care for her until her last day.
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