Dementia – the loss of intelligence, reasoning, memory, and will – is an awful thing to happen to anyone. There are many causes of dementia: Alzheimer’s disease, stroke, thyroid problems, poor nutrition, drug interactions, brain tumor, and degenerative disease. I was my mother’s caregiver for nine years and watched, helplessly, as dementia changed her appearance, personality, and mind.
Every day of caregiving was a day of anticipatory grief. I worried about myself. If I felt this badly now, how would I feel after my mother died?
My mother had been a brilliant woman, known for her intellectual curiosity and quick wit. The brilliant woman became a forgetful woman who didn’t know the date, family members, or me. Worse, my mother lost the ability to manage money. Though she had little money left, she became an addictive spender, and I had to take her checkbook and charge cards away. The concept she had instilled in me, “Don’t spend more than you have,” was forgotten.
I grieved for her lost intelligence.
When I was growing up my mother used to model hair styles. In her later years – the demented years – her hair was uncombed, she looked disheveled, zippers were open, and she would put clothes on backwards. Since she couldn’t tell dirty laundry from clean, my mother often wore stained, wrinkled, and mismatched clothing. To put it bluntly, she looked like a bag lady.
I grieved for the striking woman she had been.
Dementia erased all traces of my mother’s personality. She didn’t smile, didn’t laugh, and didn’t find pleasure in anything. It took me a long time to realize I couldn’t make her happy. Though I took her to lunch regularly, cooked a gourmet dinner for her every Sunday, and included her in all family activities, Mom’s eyes were blank. She was gone.
I grieved for her lost personality.
During my school years, college years, and long after I married and had children, my mother and I had the same understanding, humorous relationship. We laughed constantly. Jokes aside, I knew I could rely on her if I was in trouble. Many of the things I had accomplished in life could be traced to my mother’s unwavering support. But dementia changed all that.
And so I grieved for myself.
Jo Horne, in her book “Helping an Aging Loved One,” describes caring for a mentally impaired person as “an unpredictable job.” There is no known cure for Alzheimer’s disease, Horne continues, so “each caregiver must deal with individual symptoms and progressions of the disease.” I learned to adjust my caregiving tactics to my mother’s changing needs.
With the help of nursing care staff, I convinced her to wear an identification bracelet. Mom agreed to wear it after she fell and broke her arm socket. The socket was so damanged that surgeons had to install an artificial socket in her shoulder. Mom wore the identification bracelet because she was afraid of falling again and being left on the sidewalk.
Like many people with dementia my mother became angry with me and with life. I told myself that I was dealing with disease, not the parent I had known. But I had to tell myself this over and over again because Mom would do things, like opening charge accounts, that made me angry. My mother and I never disagreed and now we disagreed all the time.
I changed the activities we shared together. According to www.alzinfo.org, “Planning structured individualized activities that involve and interest the person with Alzheimer’s may reduce many of the more disturbing behaviors.” To divert my mother’s anger I would change the subject or the activity. Activities that required tracking, such as movies, were replaced with passive activities, such as listening to the church choir.
My mother’s hearing became progressively worse and I had to change the way I communicated with her. Phone communcation became impossible and I had to accept this. When Mom and I were together I faced her when I spoke and patted her arm. I also shortened my sentences. Finally, my sentences were reduced to subjects and verbs.
Towards the end of her life, when Mom’s doctor transferred her to nursing care, she thought I had abandoned her and put her in a mental institution. This made me sad, but I found comfort in the fact that I had done everything I could for her. The anticipatory grief of dementia is extremely painful and I let myself feel this pain. As Mother Teresa once said, “I have found the paradox that if I love until it hurts, then there is no hurt, but only more love.” Ten years ago I wouldn’t have understood these words. I understand them now and still feel my mother’s love for me and my love for her.
Copyright 2006 by Harriet Hodgson
Harriet Hodgson has been a nonfiction writer for 27 years and is a member of the Association of Health Care Journalists and the Association for Death Education and Counseling. Her 24th book, “Smiling Through Your Tears: Anticipating Grief,” written with Lois Krahn, MD is available from http://www.amazon.com A five-star review of the book is posted on Amazon. You will find another review on the American Hospice Foundation website under the “School Corner” heading.
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