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.
