A Caregiver’s Advice on Maintaining Patience and Understanding
BY VICKI KAUFMANN
“Compassion requires us to be weak with the weak,
vulnerable with the vulnerable, and powerless with the powerless.
Compassion means full immersion in the condition of being human.”
(Henri J.M. Nouwen)
I like to think that my training as a family counselor has given me a skill set when it comes to good listening, being objective, and putting myself in the framework of compassion, and understanding of what the other person is going through. I once read a definition of the word “understanding” that went something like this: “To understand is to stand under, which is to look up to, which is the best way to understand.” As the Dalai Lama puts it, “Love and compassion are necessities, not luxuries. Without them humanity cannot survive.”
These skills and attitude came in handy when relating to Mom, especially to put myself in her place, and to wonder what it must be like for her to lose her memories. She once explained that the disease felt like “cobwebs in my mind.” At times, I marveled at how she put on a good front and smiled as if everything was okay. Her resilience amazed me. Several times over the years I cared for her, I thought she was on the verge of death. Then she would recover and keep going.
My younger sister reminded me that I’d taught her a valuable lesson. She said it was difficult for her to spend time with Mom and to see her so frail. I told her that it was not about her, but all about Mom. That seemed to register with her, that Mom needed her to bring love, cheer, and companionship that only a family member can give.
Even though Mom lived in an assisted care facility, I wanted her to know that her family had not forgotten her. Two of my siblings live in Michigan and two live in California. Each weekend I was with Mom, I would call one or several of them on the cell phone so that she could maintain contact with them. I suggested for them to not ask Mom detailed questions over the phone, because she often became embarrassed that she didn’t know how to answer the questions. Instead, I recommended they tell Mom about their week, or what was taking place in their lives and that of their children. Occasionally, the grandchildren would get on the phone to talk to her. Usually Mom ended the phone conversations to the family with, “I love you.”
There is no shame in having dementia. Many times, I felt that medical professionals should have training in how to better understand their patients with dementia. Mom had to go to the eye specialist periodically. She had a cataract removed in one eye. Then it was discovered that she had macular degeneration in the other eye that also had a cataract. During one checkup visit, I thought the doctor was particularly harsh in his instructions to her to read the eye chart. I did not want to embarrass Mom in front of him, so I pulled the nurse aside to tell her that Mom suffered from dementia and to tell the doctor this. The next time we went for an appointment, I gave the receptionist a business-size card. I had written on it something like, “Sophia M. has been diagnosed with dementia. Please take this into consideration in your treatment of her.” It proved helpful, at least it seemed that way. I took these cards with me whenever we went to see new doctors who were not familiar with Mom’s condition.
I wrote in my journal after one of those “frustrating” doctor visits: “It bothers me that medical staff, whom I expect would be sensitive to the needs of the elderly, are often impatient. I want to shout at them, ‘There’s a great soul inside. If only I had time to tell you. There’s a creative, caring being who loves, despairs, inspires. She’s lost the ability to help herself or others, but the greatness is still there’” (2005).
One of the major worries I had was what would happen to Mom if she were ever taken alone by ambulance to the hospital. Unfortunately, this happened on several occasions. By the time I got the call and went to the hospital to be with her, Mom had been in the emergency ward for a while, waiting for the doctor. Mom appeared calm each time and seemed to know she was in a hospital. Once when she broke a leg, she was admitted for an overnight stay. She pulled out her intravenous needle at night and became frightened. She got out of bed and walked down the hallway. The nurse told me later that they had to put straps on her arms to restrain her so she wouldn’t get out of bed or pull out the IVs.
Worrying will never change the outcome of things. I tried not to be stressed, so as to give my complete attention while I was with Mom. As she declined and her world was constantly changing, I found it to be a challenge to be creative as to what I would want if I were in her place. I have the satisfaction in knowing that I did try my best to be a loving caregiver for her.
This essay was an excerpt from Vicki Kaufmann’s book “Elegy for Mom: A Memoir of Family Caregiving, Alzheimer’s, and Devotion.”
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