My journey with GaSara began when I was two years old and she became my Caregiver. Growing up with her, she taught me to be independent, strong and honest. She (with the help of a Henry Drummond book) did her best to instill in me “Patience, Kindness, Generosity, Humility, Courtesy, Unselfishness, Good Temper and Sincerity,” as a way to understand Love. GaSara was never very affectionate. She was a hard and somewhat bitter woman. Yet, she loved me very much. I took her lessons to heart and will be forever grateful for her teachings.
My journey with GaSara and Alzheimer’s disease began when I was 27 years old and I became her Caregiver. My experiences as a Caregiver have taught me many things. Only my Higher Power knows how many lessons I have yet to learn. I have learned a lot about myself. I have learned the empowerment that can be felt in accepting that some things cannot be changed, no matter how hard we pray for the change. And, by embracing that empowerment, I have learned that I can impact changes that can affect the world. Several years ago it occurred to me, “Because I exist, others exist like me.” The gift in that thought has kept me from being lonely, at so many times when I have felt completely alone. I use it as a daily affirmation. I am not alone. You are not alone. We have each other.
In 1989, when my then life partner, Marjorie, and I first moved back to my home town to care for GaSara, she was still driving her car, playing Bridge and going to church every Sunday. Within our first year back together, she could no longer do any of these activities. The isolation had begun. Most of her friends had abandoned her and my opportunity to make new friends was about gone. By the middle of 1990, GaSara began to forget concepts that make the term memory loss seem insignificant. For example, she began to forget how to bathe and dress, how to read and write, how to dial the phone and, more disturbing, how to go to the bathroom. And it just got worse and worse.
A year later, GaSara was completely dependent on me to take care of all of her needs. The unyielding pace at which this disease travels to destroy a life is astounding. By the summer of 1992, GaSara was completely incontinent, unable to bathe, dress, read or write to speak of, and her ability to verbally communicate was becoming more and more impaired. She was beginning to forget how to chew and swallow. And she had become very agitated, as a rule, and difficult to calm. I eventually agreed to try a drug to calm her. It took a heavier toll on her than I could bear, so I chose to cope with her behavior. Physically, she was very strong. And, like most Alzheimer’s patients, she wandered incessantly. I think, looking for a way out of her hell.
“Will you help me?”
“Pleeeease, will you help me?” she would beg, every day – for months, and years to come.
I knew what she wanted. She wanted me to give her, her memory back. Despite giving so much to her, day in and day out, I could never give her what she wanted. At the time, I thought I was failing her.
The isolation was taking its toll on me.
By the Fall of 1992, I was near death myself. I know, now, that I was dying. Physically, emotionally, mentally and spiritually, I was dying. I had gained almost 40 pounds. Dutifully bathing and dressing GaSara each day, I would go days without a bath or changing my own clothes. Who cared? Nobody ever saw me! Nobody knew me at the grocery! What did it matter anyway? I was fat and ugly. I hated myself. I was a failure.
I couldn’t concentrate enough to read the newspaper or write a letter. I felt utterly stupid. When Marjorie would try to comfort or motivate me, I was convinced she was only criticizing and I would lash out at her. I was exhausted, spending days at a time awake with GaSara — so loyal to GaSara, without any thought of my own needs. They didn’t matter. I didn’t matter. I was scum.
Hindsight clearly indicates I was severely depressed. But I had no idea. I was completely isolated from the outside world and any sanity, yet all I could see then, was, that I was worthless. And I was all that GaSara had.
GaSara was all that I had, and I was completely miserable.
Overwhelmed with grief and guilt and self-loathing, the only thing I was living for was GaSara. I could not see the really loving and compassionate care I was giving her. But I felt it, as constantly as my heart’s beat.
The time she took a shit (there’s no other way to put it): from her bedroom, all the way down the long hardwood hallway floor, clear down to the kitchen, then plopped her nasty Depends® right up on the breakfast room table; I really did not believe that it was perfectly human for me to get upset about it. I did worse. I yelled about it.
Convinced I was scum, I hated myself. Then, and every time I lost my cool. And I lost my cool many times. I am still not proud of that. However, today, I don’t blame myself for it anymore. I took good care of GaSara. I know that now. But back then I knew nothing about myself. I may as well have been an abandoned shell on a beach. I was empty. All of my focus and energies were on GaSara. As she died, I was dying with her. The isolation was killing me. I needed help.