Bringing the Faraway Closer

Many weekday afternoons I stole away from my workday for a little rendezvous. I drove far into the southern part of the city.

There I hurried through the lobby, walked swiftly down the corridors and until I reached the locked door. There I punched in a secret code that allowed me into the inner sanctum, the memory care unit where my mother lived.

Walking into my mother’s room was always a surprise: I never knew who would greet me; a sweet curly-haired woman wearing a pink sweat suit and looking quietly compose? An anxious haggard woman who bent to pick up invisible lint on the floor and jabbered with invisible creatures lurking in the corners? Or an exhausted former beauty, lying across the single bed wearing an orange pullover and an adult diaper? My task was to appreciate every aspect of my complicated mother and whoever she was at the moment.

When my friend Maril asked, “Can I go with you to visit your mother?” I felt like a flutter of angels had gathered around me.

“Really?” I asked. “You want to see Mom with me?”

She did. I prepared her for our visit, describing Mom’s various moods. Maril did not seem shocked, worried or afraid. I told her about walking into the sometimes chaotic energy of the locked Alzheimer’s unit. She simply nodded as if this were an ordinary occurrence, which, for me, it was.

The day of our visit I felt lightness inside; I was eager to share my secret world with my friend.

Throughout the years, Mom has always been gracious with my friends and that day was no exception. Mom was sitting at a table in the dining room with a magazine in front of her. She looked pretty and serene and she smiled when we came in. We sat next to her and Maril took her hands.

“How are you Fran?” Maril said, looking into my mother’s eyes.

“Well I you know the scatter of it all,” my mother answered.

“I do know the scatter of it all. How are you getting along here?”

“Like a diamond in the sky,” my mother said.

 

As I listened as my mother and my friend talk, I was “Your mother is really something,” Maril said as we left the home. “I enjoyed seeing her. I’d like to go again with you sometime.”proud of my mother’s poetic and eccentric answers, proud of the way she engaged in the conversation. And I was grateful that my friend was able to appreciate my mother, listen to her words and intuit their deeper  meaning.

The visit was a huge gift for me. Seeing Maril engage with and appreciate my mom just as she was reminded me of the depths of my mother’s many talents and facets. This knowledge later helped me get through those moments when my mother seemed faraway or lost. My friend reminded me- there are so many ways to carry on a good conversation. All you need is attention, intention and love.

Opening the Door

The front door of my childhood home in Memphis was the turning point. My parents had been having a hard time; my dad was complaining about Mom’s forgetfulness and Mom was distraught about Dad's nagging. As the confusion and concern deepened around my mother’s decreasing memory and increasingly odd behavior, my brother Dan and I decided we needed to do something to cheer up my parents. He lived in Chicago and I lived in Kansas City—we decided to fly to Memphis and surprise my mother for mother’s day. We talked to my father –we wanted to dress up as presents. Dad was to be home when we arrived, to let us in the house, then bring Mom into the living room for her surprise.

Picture1Dan and I met at the Memphis airport. We drove to Walgreen’s and bought shining wrapping paper, tape and bows. We parked down the street from our house and stood on the sidewalk, wrapping each other all around in paper and topping us off with bows. Then we hobbled up to our house and tapped on the door. Dad’s car was in the driveway but he didn’t answer.

We tapped louder. We knocked. We rang the bell. Meanwhile, it was quite hot in Memphis and we were sweating under our gala wrappings. Finally, we heard footsteps and my mother’s wavering voice, “Who is it?”

“It’s Debbie and Dan,” we said.

“Who?” Mom sounded suspicious.

We imagined her peering out the keyhole and seeing these two shining beings; perhaps we looked like creatures from outer space.

I took the bow off my head and said, “Mom, it’s your daughter and son. It’s OK to let us in.”

“I can’t,” Mom said.

“It’s all right,” I encouraged. “Where’s Dad?”

“I don’t know,” Mom said, sounding very lost. “Who are you?”

“Debbie and Dan, your son and daughter,” Dan said.

We heard fumbling with the door.

“I can’t get the lock open,” Mom said.Picture2

Dan and I looked at each other. Our mother could not open the door to the house where she had lived for 40 some years. That was a moment of realization—a moment of admitting this condition was more enduring and more serious that I had been willing to take in.

That door, which had always opened to my mother and my father, now opened me up to my journey to the land of dementia. Suddenly, I seemed to have a new set of parents--the father was suddenly emotional and turning to me for advice and a mother who was constantly forgetful and looking at me with sweet scared eyes wondering what she should do next.

Eventually my parents sold their house and moved into a retirement community near me in Kansas City. My journey with my mother through her Alzheimer’s led us from that community to assisted living, to a psych ward, to an Alzheimer’s unit and then finally into a long-term care facility. During that multi-year journey I focused on finding gifts and blessings in the caregivers experience and I concentrated on staying connected with my mother throughout the stages of Alzheimer’s.

Picture3In this blog I hope to share with you some of the many bits of wisdom I learned during that journey. I also hope to highlight the creative aspects of the caregiver’s journey. And I hope to learn from you. What are your gifts and blessings and how has the being part of someone’s journey through Alzheimer’s informed your life?