Expressions

A Journey Alone Together with Mom
By: Carolyn Wolfenbarger

My mother and I took an unplanned trip together. We traveled the road hand in hand for seven years, yet we did not speak of the destination. We laughed, cried, and fought with each other as mothers and daughters often do, but mostly we traveled quietly. Together we took this journey and we each traveled alone. This is my story of traveling alone together with Mom.

Mother was a professional woman who believed manners, conservatism, and good lady like behavior should guide you through life. She graduated valedictorian from high school and won a scholarship to college. Mom had a successful career and was well known and respected in the community. She and Dad ran a business while raising 3 children. Upon his retirement and subsequent death she went to work managing an office until retirement at age 71.

How Mother raised a daughter so entirely different is a mystery. She loved classical music; I prefer rock and roll. She belonged to the Women’s Club and volunteered time to community concerts and the hospital; I demonstrated for women’s rights and went to Woodstock. She played the piano, I played softball. She was soft spoken serious and determined; I am opinionated and quick to laugh. She was proper and prim. I have been called bit bohemian. I never understood why she cared so much about what the neighbors might think. Mom never understood how I could put on white shoes in October.

Throughout the years we talked on the phone and visited in person at least once a year. There was love between us but not closeness. There seemed a lack of common ground and too many differences. 

I returned home for Mother’s 80th birthday and found that things were very wrong. The house was dirty, mail and papers everywhere, spoiled food in the refrigerator; she either didn’t notice or didn’t know what to do about it. The decision was easy! Mom will come live at my house. I will take care of her. A simple decision because I didn’t understand the rollercoaster of emotions that would come to both of us on this trip. How can you can experience guilt, love, heartbreak, fun, frustration, and loneliness at the same time and never tell each other about it?

The first few weeks were full of doctor visits and the diagnosis of Alzheimer’s. Mother never spoke about this again. I tried to talk to her about it and came to the realization that this was something she intended to carry in her own heart and did not want any discussion on the topic. Within days she no longer remembered the doctor or the diagnosis. Our journey alone together began.

I watched my mother give up her independence one step at a time. She did not surrender without a fight. When I began administering her medications, she questioned each pill and assured me she could do it herself. The very next day she would argue that the pills were not hers and she wasn’t taking them. While I struggled with getting through the necessary activities of daily life she was just trying to get along in this new and confusing world. This was how we approached each day.

Much has been written about the caregiver’s role and emotional needs when dealing with a person with dementia. It is impossible to write a guide for the person with Alzheimer’s. They cannot explain the frustration, fear, and misunderstandings that they have. I read and took classes on how to rechannel or redirect behaviors. She was left alone to deal with life minute to minute. There were no books she could read, no directions to show the way. The coping mechanisms were hers to develop.

There are many memories that still bring joy to me. One afternoon, after I had put cream on Mother, I laid my head on her lap. She picked up the cream and began to put it on my face. It was with motherly caring that she applied the cream even though I had not removed my glasses. Through the grease and tears I wanted to tell her I loved her but her attention moved to other things and the moment was lost.

There are many memories that I remember with shame. Mother did not want to eat so I encouraged and cajoled. She took the food into her mouth and began to chew.  I was so proud of myself until she spit it at me. I know how I felt – anger, insult, and just plain hurt. How must the person with dementia feel as someone forces unwanted food on you?  I was worried about nutrition, Mom just needed to control part of her environment.

There are memories that bring peace to me.  The pastor had come to call. I was always apprehensive about visits. Would Mother respond positively or aggressively? The initial contact led me to believe this was not going to be a moment to cherish. When he asked about communion she informed him that he was not the one to give it to her she would go home to her own church to receive the sacraments. After a while Mother became calm and asked for a specific psalm to be read. She folded her hands and bowed her head and seemed to understand the reading. For the first time in days she and I both seemed to feel peacefulness.

Each day as we went through life I experienced it through the eyes of a caregiver. Each day Mother experienced it as a fight for independence and survival. We could not talk to each other about the changes.  Mom lost the ability to express herself in a meaningful way, and I just didn’t know how or if I should talk about what was happening.

Suddenly my mother began talking to people that had been dead for years. This is when I knew that our time together was very limited.  There were no last minute loving remarks. I held her. We were together and each alone.

Our journey was over. Looking back I still see how different we were but can also rejoice in sameness. Dementia did take so much away from Mom but I believe it also gave me an insight into her as a woman. She strove for a way to demonstrate self- sufficiency and dignity every day. We traveled the road together yet alone for we could not share the experiences we had. This did not drive us further apart but brought us closer. Maybe I helped her laugh more, I know Mom taught me to have patience and more respect for traditionalism. Because of Mom I have a love of nature and animals, fierce loyalty to family, a drive to succeed.  Maybe we weren’t so different. I am my mother’s daughter.

I think I’ll go put on white shoes and listen to some classical music. Before I go I just want to say “Mom, I love you and I’m proud to be the daughter of such a woman”.