In the late summer of 1985, Tom and I were planning our wedding. We’d both been married before and we wanted a party to celebrate our marriage with close friends and family.
A few weeks before the event, I was driving alone and heard a song on the radio that caused me to pull over to listen carefully to the words.
It was a song by Michel LeGrand, lyrics by Alan and Marilyn Bergman (who together have written some of the most amazing love songs ever penned), and sung by James Ingram and Patti Austin.
As I knew all too well, the song posed the essential question every couple must be able to answer if their love is to grow and endure as they are so sure it will when they exchange vows.
Here are the lines that sent chills up my spine:
How do you keep the music playing?
How do you make it last? ?
How do you keep the song from fading ?too fast???
How do you lose yourself to someone ?and never lose your way??
How do you not run out of new things ?to say?
I knew I wanted that to be “our song”…our first dance as man and wife.
Later, on some of our many camping trips, sipping wine around a fire, we talked about the challenge of keeping the music playing, and never losing the focus we had on each other as we pursued our busy careers.
Those were sweet times for us as a couple – and we could not imagine ever running out of new things to share and talk about together.
Now, nearly seven years after his diagnosis of Alzheimer’s Disease, I miss those long deep discussions and feel the loss terribly.
I still have the memories engraved in my mind and heart, but for Tom they are mostly gone. The song has faded for him and yet I know the love has remained.
We have been lucky…so far the Alzheimer’s has stolen only his memory, not his spirit.
In spite of this fiendish disease, he has retained a child-like sweetness, for which, in the midst of my angst and anguish, I am grateful.
The music still resonates for me, however, in a melancholy way. I try to keep it playing for him by frequent references to those happy years.
I am grateful for digital pictures that will always be available, and even some of the photos, now a bit faded, that we took of our homes, our families and our trips.
When I show them to him he does not recognize or remember them, but when I tell him about the picture, he often says “oh, yes, I remember now.” He doesn’t, but it is good for him to try.
On days when I am at less than my best, I wonder why I bother to tell him anything. He forgets almost as I speak and today’s conversation tends to be a repeat of yesterday’s.
The frustration is immense. But it helps me to believe that, somewhere inside of him, the memories still reside. He just can’t access them anymore.
When I begin a sentence with “remember the time…” he perks up and I can see how badly he wants to remember. He likes to hold my hand while we watch TV.
He often has little interest in or grasp of what program is on, but he wants to be connected to me. This is his way of trying to ‘keep the music playing’.
The journey is teaching me is that I must continue to present him with memories, even if he has no recognition.
It would be easy to just stop talking, sharing and reminding him of the moments that were so precious to us both. But frankly, I do it as much for me as for him.
I cannot let the music die away even if he no longer hears it. It would leave me with a double loss.
I know that, in a way, I am in denial. I cannot hold off the inevitable. He is declining more every day and can do less and less for himself.
But he does not consider himself a victim. He rarely complains and when the weight of being the sole decision maker begins to wear me down, he can be depended on to tell me “don’t worry. It will be just fine.”
He is my hero…my teacher…my forever love.
Classical music has been a constant in our lives, recorded or live, and I do literally keep it playing in the house and car most of the time.
I know Alzheimer’s patients have been shown to respond well to familiar music. But Tom also loves 50’s music, country (Willie Nelson!) and a wide range of singers, some of whom I never heard of.
One day last week, as we drove to another doctor’s appointment, the “oldies station” (a favorite of his) began playing Tennessee Ernie Ford’s “Sixteen Tons” and Tom began to sing.
He not only knew every word, he had all of Ernie’s inflections and pronunciations, and we laughed because of the strange way that the mind works. The laugh felt so good to both of us.
How long is a memory? It is as long or short as love, as swift as a breath of hope, as constant as the river’s flow.
Tom will never run out of new things to say. He says the same things every day but for him it’s always new.
For me, the song is fading much too fast. My task is to keep drawing his attention to what he has always loved, and keep playing our music. I will do that as long as I can.
Here are a few lines that came to me recently:
I wear a bright scarf you said you like;
it swings in the breeze and pulses
to the rhythm of a song we love;
it warms me as I hum it for you
and the light shines in your eyes
for a moment
then is gone.
Image credit: BrandiFitzgerald on Etsy