I met Tom in 1982, both of us having ended long first marriages several years before. What I noticed first about him was how he loved his work.
A Georgia Tech grad, he had been in the computer industry from almost the very beginning and was considered a brilliant programmer at Honeywell, where he had spent most of the past 25 years.
As he talked about his work, his eyes lit up and he said “and they pay me, too!” Clearly his career was a top priority in his life. He felt completely competent in front of a computer and loved the really challenging projects to work on…the tougher the better!
He was less secure where women were concerned and on our first date he told me that ‘most women find me boring.’ I may have fallen in love with him at that moment. I loved his honesty and intensity, his lack of arrogance and his wacky sense of humor that so matched mine.
Three years later we were married and will soon be celebrating our 27th anniversary. The first 20 years of our relationship were mostly joyous, filled with deep and honest conversations on many topics, many laughs and so much love.
As we both enjoyed our work a great deal, we had not given much thought to retirement. Then, on one of our camping trips, we discovered a small town in southern Arizona that was quiet, beautiful and far from the heat of Phoenix where we lived. Suddenly the idea of retirement began to take on meaning.
In 2003, we bought a five acre lot with a 360 degree view of mountains and rolling hills in the grasslands…right in the heart of Arizona Wine Country. Over the next 2-3 years I searched the internet for house plans that we could use to build our dream home.
It was an exciting project that consumed us both. Most weekends we packed up the trailer and drove 2.5 hours to our lot, each trip leaving more of ourselves behind and eagerly looking forward to living there the rest of our lives.
At about that time, Tom began coming home from work feeling exhausted, frustrated and upset. He would mention that he was having trouble focusing, was making mistakes and generally feeling like he was ‘losing it.’ I hated seeing him this way but I had noticed his behavior seemed different at home also.
He couldn’t seem to remember conversations we had, plans we made, etc. I began to worry about him. Then a few days after Christmas, he went to Scottsdale to return a gift and lost his truck. He called me and said he had been searching for hours and could not remember where he had parked it. That was the beginning of our journey through the Alzheimer’s Disease wilderness.
He was diagnosed a few months later, just two weeks after we both retired. The doctor said it looked like Alzheimer’s or MCI (Mild Cognitive Impairment) and the simple test that everyone is given seemed to confirm it.
I was terrified as we held each other and cried. It was clear that our lives were going to be different than we had planned but the one thing I knew at that moment was that we were not going to give the disease more power over our lives than we had to.
We would deal with whatever came on but that would mean not wasting a single day of the life that lay ahead. Our house was being built and we were moving to a town of about a thousand people to a place where we knew no one.
Our children were scattered around the country, none very close, and we knew that every doctor’s appointment would require a 100 mile round trip.
On some level, I worried that perhaps we were not doing the right thing, but we were already in love with this magical place. We could sit for hours just looking at the sky, or at what we called “our mountain.” I could not know what was ahead for us but I knew, more clearly than I had ever known anything, that this is where we must be. Nothing had ever felt so right.
That was six years ago and our home is a haven and a solace to us both. Most evenings we sit on the patio and watch our stunning sunsets and Tom says to me, “I love this place.” His short term memory is gone and much of the past six years he remembers only when I prompt or tell him.
He loves to walk our dirt roads and has a route he follows. All our neighbors know and love him and watch out for any sign that he needs help. The biggest blessing in all of this is that his disposition is still gentle and loving.
He often tells our friends how good his life is and that his wife never loses patience with him! That’s one of those rare Alzheimer’s gifts…I certainly do lose patience once in a while but he doesn’t remember it!
I began to realize how critical it would be to take care of myself, physically and emotionally, if I was to be his sole caregiver. I was now in charge of everything. Suddenly I was doing the finances, the home management, all the decision making and all the healthcare for both of us. I knew it would consume me if I did not find a creative way to fill my well.
A musician all my life, I had always found expression with my singing, but sopranos do not go on forever and I was nearing 70. I knew I had to have an outlet for the torrent of feelings and emotions that never let up.
Poetry has become that outlet. In 2009, I published my first book, Sip Wine, Drink Stars and two years later Dance on a Dirt Road, Poems for Life’s Rough Places. No one is more surprised than I that poetry has become such a powerful force in my life. It has given me a purpose beyond caring for Tom and a sense of utter peace when I put my thoughts on paper.
It’s not the life I expected, but I have actually learned some valuable lessons, one of which is how to really live in the moment. For Tom there is no five minutes ago. It is now…or never.
Up to now the disease has been blessedly slow moving and we know that probably will not last.
But today, we are hanging on to each moment and wringing from it every morsel of what is still good and beautiful, here in our little country home.