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STANDING IN LINE at the busy grocery store, my mother and I had an unsettling conversation about my sister Bobbie.
"Mom, did you tell Bobbie that I called yesterday?" I asked.
"You called? When?"
Once again, I kept my frustration inside. I told myself that she had too much on her mind to keep everything straight.
Suddenly she exclaimed, "I forgot my wallet!! I can't pay for my groceries."
This was so embarrassing. The people behind us were getting impatient. Then I noticed the baby food and diapers in her shopping cart. Where is her cart, and who does this cart belong to?
Then my mother whispered, "I think your sister is stealing my clothes and selling them."
I saw these subtle and not-so-subtle changes in my mother as she turned 70. Initially, I assumed she was overwhelmed by the comings and goings of her many young grandchildren and the sudden death of my brother, the second oldest of 12 children. I thought these events were the root of her "forgetfulness." Although I was a nurse who prided herself on her nursing instincts, this time I couldn't accept what my gut was telling me: My mother could have Alzheimer disease.
Despite my denial, I did all the right things, including taking my mother for a complete physical exam. The whole family worked hard to try to decrease the daily chaos, hoping that better organization might reduce some of her confusion.
Finally, I took her to a memory disorders clinic, where I was forced to confront what I'd suspected all along. The diagnosis-it was indeed Alzheimer disease-was difficult to hear. But throughout life, my mother had taught me to accept life's challenges and move forward, so that's what I prepared to do.
In our family, nursing is the predominant profession among the large contingent of women, so I thought we possessed the skills and knowledge necessary to care for my mother. And we managed well while her disease was in the earlier stages. Two of my sisters lived with her, and the rest of the family helped out. But as her disease progressed, she became incontinent, agitated, fearful, and unable to do the simplest of tasks. Keeping her comfortable and safe was increasingly challenging.
The first challenge came when both of my sisters went away at the same time. As one family member after another came in to help in their absence, we noticed that my mother was getting more anxious. She said, "I want to go home now. Where's my mother?"
Our knee-jerk reaction was to attempt to reorient our mother, but this caused more anguish and escalated her anxiety. She repeatedly begged us to take her home. Eventually, we decided to live in her moment. Each evening, we took turns taking her for a car ride, always taking the same route. When we pulled up to her house at the end of the ride, she'd sigh, "Thank God we're home." We knew then that she'd calmed down and would go to sleep.
But we couldn't outsmart her. If we tried shortening the trip or taking an alternate route, we'd be going out again.
As time went on, she began demanding to see her mother once she got home. Because her mother had died 30 years before, we needed a strategy. We scripted a story from earlier days, saying that her mother was upstairs sleeping because she needed to get up early in the morning.
My mother taught me that change is frightening for persons with dementia, as well as the importance of routine. In a typical hospital setting, routine is important, but it's usually our routine, not the patient's. We should be continually adapting our routines to the individual rather than the other way around.
But the most important thing I learned was that this is a disease that affects entire families and the relationships within them. We must recognize that caregivers need our guidance and patience. We need to offer resources and support systems to help families manage at home or refer them to hospice services if appropriate.
As my mother succumbed to the final stages of the disease, our family called on hospice to help us care for her at home. The most difficult decision of all was recognizing that her time with us was coming to an end. This was when she taught me one final lesson. Even though Alzheimer disease had taken away her memory and many abilities, my mother still possessed dignity and grace. She transferred her peace and strength to her family around her.
After my mother's death, I reflected on all the valuable lessons she'd taught me in the last 7 years of her life. The experience of caring for her has changed who I am as a nurse. Now I'm not afraid to hold a hand, to listen to a story, to sing a song, to shed a tear.
Mom, you not only made me a better person, you made me a better nurse.
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