By Chuck Bauerlein
Last January, my sister in Wisconsin wrote to the other siblings some news about my mother, Agnes. She is slowly dying of Alzheimer’s disease and her decline had taken an ominous turn. Mom’s physician had told my sister that my Mother was having trouble swallowing food.
Families who have witnessed their loved ones slowly dying know this is one of the final stages of this pernicious disease. When a person can’t remember to swallow his or her food, the body cannot sustain itself. Her doctor said she would likely have between six and 12 months to live.
I knew I might be pushing my luck if I waited to see her until this summer, but my work schedule was full and other siblings were going out to visit her, so I waited until this past weekend to go and say my farewells.
I arrived in Oshkosh on the evening of July 3rd, but didn’t go visit her until the morning to the 4th of July. She was sitting at her standard spot at a table with two other patients who could still talk.
Her head was bent low and she was slowly taking food from one of the home assistants. I took over the feeding and spent an hour slowly helping my mom eat a small canister of peach yogurt and one scrambled egg, one small swallow at a time. She was able to wash the soft food down pulling cranberry juice out of a cup with a plastic straw.
Mom did not know who I was; she had no recognition of me. She ate with her eyes closed.
I talked to her and tried to engage her, or at least get her to open her eyes, but without any luck. I noticed several other patients in the room were not eating either. I don’t know if they were not hungry or if they, too, were in the late stages of Alzheimer’s and simply had forgotten how to feed themselves. There were nine patients total and very little conversation in the room – except for the nurse assistants encouraging them to eat.
Afterwards I took my mother in her wheelchair out to a small garden near her room. A pleasant Wisconsin summer morning unfolded before us, alive with birdsong and the scent of blooming flowers. Mom was oblivious. I reached out and took her hand in mine and was surprised when I felt her aged, translucent fingers squeezing mine. I talked to her, but her head remained permanently fixed in a bent position. She was there, but she wasn’t in the present.
Later in the day, a driver from her care facility brought her out to my sister’s farm in Neenah, about five or six miles away. My brother Mark, who lives about a mile from my mom, prepared a typical July 4th feast of grilled corn on the cob, potato salad and hamburgers. Mark, my sister, her husband Michael and me and Mom sat under a huge shade tree and enjoyed the meal. Heidi spoon fed my Mother soft food that she managed to swallow.
The chitchat seemed to get through to my mother. An occasional smile would spread across her lips. Maybe she could recognize the voices of my Wisconsin siblings. Maybe they were familiar enough for my mother to recognize and remember the sound of their voices and evoke some distant memory. It was hard to know. But it was a wonderful moment to witness.
My sister took some pictures to commemorate my visit to Mother and our 4th of July. I reached around her shoulders and pulled her close and kissed her.
On Sunday morning, my brother came with me to visit Mom. It was after breakfast and we sat with her in the garden. His familiar voice cheered her. We talked about the Phillies’ sorry season or something as trivial. Her eyes opened wide for the first time in three days and she smiled. Mark noticed and talked to her and made a comment that made her chuckle. It was undeniable. For a minute or three, she was there with us. Alive again; fully in the moment. She couldn’t talk, but she could communicate with her eyes and her face was full of love and happiness. It was a small miracle. I felt so blessed to witness it.
Later that evening, my sister Heidi came to help me serve Mom dinner at the care facility. The morose silence of the dining room was more than Heidi could bear and she suggested we take Mom outside to the garden. There we slowly fed Mom her meal and engaged in a lively discussion about Heidi’s work for a Wisconsin corporation.
In the middle of our conversation my mother started to laugh, a belly laugh from deep inside of herself. She was trying to with all her will to articulate a thought and utter a complete sentence. She was joining the conversation. Heidi and I looked at one another in complete astonishment. Then we both laughed. And Mom laughed with us.
Before I left Oshkosh on Monday, I went back to feed her one last meal. Peach yogurt and a scrambled egg again. It took 75 minutes for her to eat a meal I could have devoured in 90 seconds. But I was conscious of every bite; every swallow. And I reminded myself how there must have been hundreds of hours when my mother was patiently waiting for me to swallow my jarred apricots or baby formula when I was six or seven months old. And how many thousands of times my mother must have performed this same chore with my siblings over the years.
And the seconds of this feeding seemed to rush by like summer lightning and I knew I might never be able to perform this task again. Ever.
I took my mother out to the garden one last time. I took her withered, wrinkled hand in mind and I told her I hoped I might come back to see her in November for Thanksgiving and she should try to hang on if she could. But I also told her Dad was anxious to see her and it was okay if she had to go.
I told my mother she had been an incredible mother to me and my siblings and how lucky I was to have her in my life for so long. And then I said goodbye. Mom managed to open her eyes for me and I looked into her eyes. I can’t know of course if what I saw was what she saw. But it felt to me as if she seemed to sense this might be the last time we might see one another on this Earth.
Then she squeezed my finger one last time and the light in her eyes seemed to flicker and fade. After a few more minutes in the garden I wheeled her back into the facility and put her in front of the community TV, where two other patients dozed peacefully.
I pulled her shoulders into my chest and I told her I loved her very much.
I had a plane to catch. It was time to leave.