99: Changing My Expectations

99: Changing My Expectations

From Chicken Soup for the Soul: Family Caregivers

Changing My Expectations

The best things in life are unexpected—because there were no expectations.

~Eli Khamarov, Surviving on Planet Reebok

To mark the occasion of my mother’s 75th birthday, I drove 30 miles north of Springfield to visit her in Lincoln. I had been making this same dutiful trip for nearly nine years, and it amazed me to contemplate just how much time had passed since being forced to involuntarily place my mother in a healthcare facility.

I arrived at the nursing home as the residents were finishing their midday meal and quickly located my mother at the round table in the farthest corner of the dining room. This section was dedicated to the elderly requiring the most help to eat their meals, and additional staff monitored the table and responded to the extensive needs of this dining party. After introducing myself, I offered to take over feeding my mother her remaining lunch. As I alternated slowly between spoonfuls of all-pureed food, I had ample time to assess my mother’s overall physical appearance. Although my visits had dwindled considerably in the past several years, she still appeared the same, perhaps only a bit thinner.

As usual, when not resting in her bed, Mom was sitting in her reclining geriatric chair, the medical equivalent of a La-Z-Boy on wheels. Her body movements were constantly monitored by the personal safety alarm affixed to the chair and also pinned to the top of her right shoulder. She was wearing a large bib to catch the runny food as it dribbled down her wrinkled face. Completely dependent on others for her meals now, she opened her mouth slowly to chew and swallow small spoonfuls, as if eating was a difficult task.

Mom’s arms were wrapped tightly around her body, her legs were deeply bent at the knees and pulled up to her right side, and her fingers were clenched into deformed fists. This twisted pose, resembling a protective fetal position, was possible because the footrest of her geriatric chair was extended. For no apparent reason, she abruptly raised her left arm and held it up high in the air, as if requesting permission to talk. But no question would escape her lips because Mom had not spoken for the past three years. My attempts to lower her arm by applying gentle downward pressure failed, and Mom continued to keep her left arm raised in the air.

As I continued to study Mom’s physical appearance, I was saddened to realize that none of her former friends would recognize her now. My mother looked nothing like the beautiful woman who had entered this nursing home almost nine years ago and had disproportionately aged over 20 years in that time. She was dressed in standard attire—baggy gray sweatpants and a loose-fitting, button-up shirt—both allowing for easy dressing and laundering. Her undergarments consisted of a comfortable stretchy white undershirt and an adult diaper, necessary for many years now due to her incontinence. Her neatly cuffed crew socks were perfectly white because Mom could no longer walk and hadn’t had the desire or strength to attempt it in the past three years.

My inspection ended when Mom declared lunch was over by suddenly refusing to open her mouth any longer. After wiping the remaining food from Mom’s face, I wheeled her from the dining room into the empty family room located just past the nurses’ station. Meanwhile, my mother still stubbornly held her left arm extended in the air, although it was sagging lower now as she grew tired.

This was my favorite part of visiting, and I pulled out my cosmetic supplies and got straight to work by first brushing her hair in a misguided attempt to make it lie better. Next, I gently cut and filed her jagged fingernails; her nails were always in desperate need of tender, loving care. Then I slathered Vaseline on her chapped lips and slowly massaged vanilla-scented body lotion on her neck, shoulders, arms, and hands. I was never certain if Mom liked this routine because she never objected or showed signs of enjoyment, but it always made me feel useful in some small way.

Over the past 13 years, I have watched helplessly, like a passive member of a captive audience viewing a tragic Shakespearian play, as a cruel and heartless thief slowly and painstakingly stole everything from my mother: personality, job, independence, home, possessions, money, cognition, memory, mental health, dignity, quality of life, and finally her physical health. Mom is currently left with only one card left to play in this deadly Alzheimer’s game: her extraordinary will to live. This last recognizable trace of what used to be my mother, coupled with the excellent and compassionate care she receives at the nursing home and the ongoing love of her children, continue to keep my mother alive.

It would seem unfathomable for most, but my visits have finally become a pleasant experience after a great deal of soul searching. I had struggled for years watching my mother decline, painfully witnessing her waste away without the ability to help. I came to see her at the nursing home with high hopes of sustaining the special connection between the two of us as mother and daughter, desperately trying to preserve the close bond that existed between us before she became ill. But it wasn’t possible any longer, leaving me frustrated, bitterly disappointed, and reluctant to return because it was too difficult to accept that our relationship, as I had known it, was gone forever.

As her illness progressed and merciful time allowed me to ultimately accept her fate, I was finally able to let go of our previous relationship. I learned not to expect anything from my mother: not to watch for a smile of recognition, not to anticipate any intimate discussion, not to hear her speak my name, or even to speak at all. Shedding all those unrealistic and selfish desires set me free at last.

Without expectations, I learned to enjoy merely spending time with her. I found happiness just holding her hand, brushing her hair, reading to her or wheeling her outside to feel the sunshine on her face.

Mom’s 75th birthday was drawing to a close, another bittersweet celebration mixed with happiness at seeing Mom reach another year in her life and sadness from witnessing what little quality of life remained. I couldn’t help but wonder how many more birthdays Mom would see as I prepared to leave. Kissing my mother goodbye, I prayed that I might also share her determination and strength for the untold future that lay before us.

~Kathleen H. Wheeler

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