The Education of a Caregiver

Long before my mother was diagnosed with Alzheimer’s disease my family and I knew that something was affecting her. Lifelong activities had been gradually set aside, as well as personal and sentimental items, some of which were never found again. It was six months before we were able to convince her that she needed a professional diagnostic evaluation, and that such a consult would be in her best interests. Once in the doctors office she was ushered into a battery of tests, including a CT scan and an MRI, which were enough to confirm an initial diagnosis. Several nerve-wracking weeks later, back at the doctor for an unrelated appointment, she was told bluntly that she had dementia with all of the indicators of Alzheimer’s disease. She was fifty-four years old and had likely been keeping up appearances for years.

Early-onset Alzheimer’s disease (EOAD) is a difficult diagnosis to accept. However, despite an adamant desire to never again see the physician who delivered the diagnosis, she took it better than I did. I had a head full of misinformation and denial and as I watched my family band together I drifted slowly away. I felt as if the light had gone off and I was lost without her. The gates of dementia were slowly closing, effectively isolating me in darkness. I closed up, and through reckless attempts to protect myself from pain I cut myself off from possible joy.

I was to spend two years in that morass of denial and self-obfuscation. By then what lingering hopes I once entertained had been long since smashed by the rapid progression of her disease. Incredibly, I still knew next to nothing about EOAD save that it was rapid, progressive, and terminal. Those lonely years had taken their toll on my own health. By the time I was ready to accept her diagnosis the both of us were in need of care.

I entered treatment and and my mother entered an Alzheimer’s disease specific day-care. She was well cared for, fed, and engaged during the day. It was a lifesaver for my beleaguered family. Day to day errands that had piled up were completed. Old letters and social calls were answered. Late bills were paid. A thoroughly messy house was cleaned. And lives that had been on hold found a second wind and began to pick up steam. But they were exhausted. Seeing this I developed a strong desire for a more active role in the care of my mother and endeavored to make up for my long absence.

Nothing could have prepared me for her appearance. She had lost weight and sometimes tended to look not at me but past me. She had trouble speaking coherently, and repeated certain words over and over to fill the silent moments with sound. It was obvious that her cognizant function had declined considerably. Her mood was erratic. But she knew who I was, and as I struggled to hold back tears she gave me a smile that transformed her entirely to something vibrant with love and life, if not complete memory. I scooped her up and hugged her, finally realizing that I had a place in my family, and that like them I would do anything to keep her smiling and happy.

I had a lot to learn.

The Alzheimer’s Family Center where my mother attended day-care held weekly support groups and co-hosted information symposiums with other dementia organizations like the Alzheimer’s Association and local respite and elder care facilities. My father, who had been attending groups for over a year, invited me to the weekly support group, and my education began.

The first rule of caregiving is to take care of yourself first. This close-knit group made me painfully aware, by relating their personal experiences, what would happen to my mother if something were to happen to her caregivers. I was taken with their brutal honesty and knowing advice. After a while I opened up and shared my frustrations, expecting nothing like what I received – unconditional care and support from men and women like me – thrust into a situation not of our choosing but within our control. We leaned on each other, cried on each other, and laughed with each other. But more than anything, we learned from each other.

I learned how to communicate with my mother. More important than words, which may or may not have been heard correctly, were calm tones and . Oftentimes holding her hand gently during a walk told her more than words ever could.

I learned to structure activities like walks and meals around a schedule that does not vary from day to day. My mother grew to learn the routine and it became a comfort to her.

I learned to prepare beforehand for any trip to the doctor or other healthcare professional. Providing a written summary of behavior that the doctor cannot observe as well as any questions that I had has saved me from countless trips and emails and exasperation.

I learned to cut up her food and serve it in small portions. If we were out I could request that the kitchen cut it up for her. Meals became slower affairs. It was easier for her to eat without utensils, so our food choices reflected this. Finger-foods became a staple at restaurants and snacks were always available at home.

When pills became difficult we got capsules and sprinkled them on applesauce.

These lessons we learned and shared with each other as necessity provided. More important, though, we learned that nothing lasts forever. In time, and over time, we learned to let go. Our loved ones we took care of and kept close to our hearts, knowing that they were destined for other places. When my mother left I was prepared. We mourned her loss, and celebrated her life, and afterward we stayed to help newer caregivers educate themselves.

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~ by dobriensd on September 4, 2010.

One Response to “The Education of a Caregiver”

  1. Very candid, very touching. I am Filipino and our families are closely-knit like yours seems to be. Your pain is felt in countless households around my country when sickness befalls ageing members of the family. I myself had to live with my Mother when she battled with cancer and I know exactly how you are feeling. Be strong! Pray!

    Rex Raymond
    http://www.lifesomundane.net/

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