Reflections on Alvin and Alzheimer's
I am the daughter of an artist. My father, Alvin Paige, was beautiful (as many would comment) until the day he passed away. If Alvin was in the room, everyone knew it because he had a magnetic personality and a booming voice to match.
He was a one-word wonder known simply to most as “Alvin”.
Alvin was born in LaGrange, Georgia under the stifling grips of Jim Crow. As one of 14 children in the segregated south, he pushed beyond boundaries and exhibited a number of “firsts” at a young age. First African-American lifeguard was one of the accomplishments that made people take notice of my father.
People also noted that he was an exceptionally talented artist. One week before his school graduation, the circus came to his small town. On the very morning that he was to receive his diploma he took the chance literally to “run away with the circus” as he boarded the train heading north to work as a sketch artist.
He landed in Greenwich Village and lived the life of an artist. Later he joined the Air Force and traveled the world as a soldier finding and learning about art and culture along the way.
My father married my mother, Ruth, and they raised three children together in New England. Eventually, Alvin became the director of the performing Arts Gallery at American International College in Springfield, Massachusetts. He remained in that position for 30 years. He retired in 2007 and he was diagnosed with Alzheimer’s months later. He died in 2010.
As a child I admired my father, but I didn’t always like him. He was a tough father in many ways, and his parenting style was not at all what one might imagine of an artist. Still, I admired his ability to do anything. I was in awe of his public image. He was fearless and he taught me how to advocate for myself and for others.
Admittedly, I secretly wished for a father who was more like Mr. Rogers or Bill Cosby. A father who would not travel away so much, or a father who was not so busy with his art life. I wished for a Dad who was quiet, a dad who mowed the lawn, a dad that people didn’t know.
And the truth is, as I got older, I saw less and less of my father. My parents divorced, and as I married and started my own family, my father simply became an infrequent voice on the phone. Once a year he would blow into town with an armful of gifts to celebrate Christmas…in February. Hours later he would leave and we’d always look around the room and ask ourselves “What just happened here?”
We’d await word to pencil him in for the next year. I took solace in knowing that I could always, with no exceptions, reach my father by phone. He always picked up, and he was always happy to hear from me. That was the relationship that worked for us.
Alvin’s diagnosis came as a shock to me, but when I look back all the signs were there. He called more frequently asking for phone numbers and birthdates. He seemed lost, but I attributed that to retirement.
As my father’s disease quickly progressed, I became his caretaker. It was all so sudden, and I was met with resistance as he moved into an Assisted Living community.
There were early adjustments: My father “escaped” twice from assisted living. He casually walked out the front door carrying his trademark backpack, yellow legal pad with a list of “To-do’s”. He looked so “normal” that no one questioned him.
A funny thing happened with this disease -- as if by magic, my father was “there”. Not traveling or thousands of miles away, but physically in a space where I had to see him daily to manage his care. The man that I rarely saw face to face was growing dependent on me being present for him.
I struggled internally, asking myself, “Why are you doing this when he never had time for you?” The answer was always that it was the right thing to do.
Before his diagnosis my father was working on a retrospective of his life’s work as an artist, but we soon found that he could not handle the magnitude of the project. I promised my father that I would complete the project for him and I did, creating a documentary film that highlighted his accomplishments.
My father was celebrated at the screening of the documentary, and I was pleased that he sat in the audience to attend “his” event. This also marked a new beginning for us. He was a completely different person. I actually found him delightful.
A few weeks later he made a rapid decline and I began juggling doctors, facilities, insurance and Alzheimer’s. As a mother of two young children and a wife of a head of a private school, my life seemed to be a series of odd bookends. I would get my children off to school and drive across the state line to visit and manage my father’s care, and return home in time to prepare dinner for our children, help with homework, and start a load of laundry.
Many times I would find myself hosting an event or attending a charity function in the evenings. I was exhausted. My father was moved many times as he declined and sometimes, depending on how far away he was, I would arrive in time for a 20 minute visit, turn around and drive 2 or 3 hours back home.
Needless to say, my own health suffered. I lived on fast food and coffee.
When I say that I learned how to manage a parent with Alzheimer’s, it’s a huge understatement. I found that my father was simultaneously a victim of his disease and a victim of a health care system that is not altogether prepared to serve people with this diagnosis.
In two years time my father made 11 moves through hospitals and facilities. He began trying to manage his life working and living in his art studio during the week. A health care worker would drop in to make sure that he had his medication. Food and general safety became an issue so he moved to assisted living. From there his temporary residences included several rehabilitation facilities, numerous ER/hospital stays, one year long stay at a Hospice home, one geriatric psych ward stay and one residential nursing home stay.
I learned to be savvy. By our 3rd move, I learned that I needed to make the doctors, nurses and CNA’s (Certified Nurse’s Assistants) want to care for my father. I played up his status as an artist. I traveled with a binder of his accomplishments. I would leave the binder in a conspicuous place in his room and most of the time it would create enough of a buzz that would ensure a little extra care.
A year after my father’s diagnosis, he started gaining new titles and labels: “ a problem” or as a person with “behavioral issues”. I felt as if I was caring for a delinquent teenager: “Alvin is wandering too much.” “Alvin spit on the floor.” “Alvin can stay, but you should think about medicating him.” These calls caused me to worry so much that I was losing sleep.
One call, however, still makes me laugh out loud: “Alvin got out of bed in the middle of the night and removed all of the paintings from the hallways in his wing. He has taken them all to his room.” To which I replied, “I’m sorry, I’m sure he must feel that he is in his art studio….you know you can bolt the paintings to the wall.” The nurse replied, “They were bolted to the wall!”
One October afternoon I stopped in to visit my dad for lunch. He loved soul food and beer and I knew that he would be happy to have both. Each time I tried to feed him, he turned away. The next day was the same. My father had made a choice to stop eating. To stop participating in his life as it were.
Two days went by and the nurses worried and asked that we feed him intravenously. I declined, remembering my father’s Living Will and his instruction of DNR (Do Not Resuscitate). My father had no control in his life until this time and I was not about to take that away from him.
It took my father 6 days to labor to his death. He rallied his family and his friends and he died on a beautiful fall afternoon. The days to follow were focused on a memorial and removing his belongings from the nursing home.
No longer did I have a routine with my father. No more strolls with me pushing him on walking trails playing the latest episode of “This American Life” on my phone. It was done and I missed him.
I missed the “new” father that I had finally forged a relationship with because of Alzheimer’s.
I finally loved the man that I had struggled to like my entire life.
Monica Bisgaard has been an educator for twenty years. She began her work in independent schools where she taught, counseled and advised students in middle and upper schools. Monica holds a masters degree in education in Human Development and Psychology from the Harvard School of Education. She loves documentary film and she has produced two films. Her most recent piece "Alvin Paige: The Retrospective, I Remember" is about her late father, artist, Alvin Paige. Monica throughly enjoys travel and photography and you can often find her behind a camera lens. Her favorite subjects are her family. She and her husband, Dennis, live in New England with their two children.