Love Song

Dale and I discovered early on that music had a central place in each of our lives. Over the years of our marriage, music filled our days and brought us joy—at home, at concerts, on the road. We traveled many a mile singing along to songs on the car radio and playing our version of “name that tune.”     

Music only grew in importance when we began living with Alzheimer’s. In mid-stage disease, music lifted Dale’s spirits like nothing else, and he would often break into his “freestyle” dance. During the last few years of our daily walks, we would sing together. “You Are My Sunshine” was a favorite.

While it’s difficult to know when the last time is for anything in this disease, it appears that our singing together has come to an end.

I still sing to Dale. But I miss his voice. I miss his exuberant rendition of certain songs. I miss the sound of our voices together.

And I miss that “sound” in other aspects of life. Although I’ve had years to become accustomed to doing many things alone, I still feel an uneasy silence where his voice used to be. I think, “Dale would know this.” “Dale would remember that story.” I yearn for his humor and laughter, his reality-checks, his loving reassurance. I long to hear his part of the duet we once sang together as a couple.

In my grieving, it is comforting to remember that from the beginning of our marriage till now, others have been singing with us. A sanctuary filled with friends and family witnessed our union. Loved ones have been there for and with us—our “back-up singers” who made our song more beautiful. That is still true.

It also helps to affirm that the melody we sang as a couple sounds on. I hear it in the daily walk of this journey. And as some music does, it has made its way into my very being. I am more than I was because of our relationship, because of who we were and are together. I carry our song within me.

As decisions in this stage of his illness become more difficult, may I sing our song with courage, listening for Dale’s part so we are in tune. May Love always remain its theme.

Does He Still Know You?

I’m asked this question more often now. I don’t always know what to say.

Last week, the receptionist at the dentist’s office asked.

I replied, “Sometimes.”

Sometimes there’s a clear look of recognition in his eyes. I’ve known it for decades. It’s Dale looking at Norma, or at least, at someone he loves.

Other times there is no recognition that I can discern. During those times, it seems that I could be anyone as I feed him, help him in the bathroom, put him to bed.

Several years ago, he stopped saying my name. Last year, he told our caregiver that I was his “mommy.” Each shift was disorienting, but his looks of recognition reassured me that I was still someone he knew.

Now these, too, are fading. It feels as though I am leaving his sight, his awareness.

The disease has been separating us for years, removing recent experiences, shared history, common language. Whenever I feel unseen by him, the reality of this separation hits especially hard.

More and more, Dale is on a different path and entering a world that I am not a part of.

It is the most painful part of the journey to this point.

Does he know me? I’m not sure. Sometimes.

I hold on to hope that he knows me in ways I may not be able to discern.

Even more, I hold on to hope that he feels known by me.

Each evening when I help him get back in bed, I pull up his covers and say, “I love you, Dale.”

Last night he replied, “I know it.” I told him I was glad.

Even though Dale may not know me in the ways he used to or in ways that I can see, may he know this: that he is loved.

May he always know he is loved.

Moments

When reflecting on Dale’s recent changes, I’ve thought, “Our moments keep getting shorter.”

For most of Dale’s disease, we shared the present. Despite the losses of memory and language, we could be together in the moment. But this is waning now, too. Times of recognition and meaningful exchanges are brief and less frequent.

Our moments keep getting shorter.

Photo: Norma Sessions

When they occur, it is like being surprised by beauty…like looking up and seeing a glorious cloud formation, or a rainbow, or a spectacular sunset. In these moments I am suddenly stopped in my tracks. Fully present. In awe.

Such a moment happened earlier this month, on the evening of our 36th wedding anniversary.

Dale tires easily and goes to bed early. However, he doesn’t always rest easily. Confusion increases. I often see him pointing up toward the corners of the room, saying things I don’t understand. Sometimes my presence seems to disturb rather than comfort him.

When I went in the bedroom that evening, I found him awake and making eye contact with me. I knelt beside the bed so we could be face to face. His eyes were clear and focused. He smiled and said, “You’re pretty!” I thanked him and told him I loved him. He returned the “I love you” but soon his attention was elsewhere. I held his hand and he looked at me again, saying, “You’re pretty!” and then “I love you” in response to my saying it. For some minutes we were together like this. Together in our moments. Connected in love. A precious anniversary gift.

“Sometimes you picture me, I’m walking too far ahead
You’re calling to me, I can’t hear what you’ve said
Then you say, ‘Go slow’, I fall behind
The second hand unwinds.

If you’re lost, you can look and you will find me
Time after time.
If you fall, I will catch you, I will be waiting
Time after time.”

From Cyndi Lauper’s “Time After Time,” the song we selected as “ours” and danced to during our wedding reception, June 2, 1985

Rivers in the Desert

When we first began living with Alzheimer’s, I looked ahead to a future of loss upon loss: relentless destruction of memories and abilities for Dale; mounting grief and exhaustion for me.

Photo: Norma Sessions

The disease has certainly lived up to its reputation. It has created gaping caverns where thoughts once effortlessly flowed. It has made everyday tasks—dressing, bathing, toileting—baffling puzzles that cannot be completed without help. Grief for these losses is a constant undercurrent and restful sleep is a welcomed gift.

And yet, amid the terrible destruction, amid the unraveling of relationship and shared story, there has been a forming.

A new thing.

Like new skin—imperceptibly created as the old sheds—a new way of being “us” has formed.

This new thing has not appeared merely in spite of, but rather because of what has been lost. Like a seedling springing up from decaying wood, it is nourished by loss.

In the past, our thoughts, ideas, and memories ruled our interactions. They fueled our conversations, created our history, propelled our plans and activities.

But the disease has removed that capacity in us. Cognition is no longer the dominant force in who we are together. Its decline makes space for new ways of being, for the flow of life in the present.

In the present, we simply ARE. We are learning to BE and to love in new ways.

There is a special tenderness as I become the hands for Dale, tending to all that he once did for himself. Laughter and delight erupt spontaneously with things that have become surprises: seeing a neighbor, tasting an ice cream cone, hearing Chuck Berry’s “Maybellene.” Gratitude and awe expand each time we walk outside and the blue sky is completely amazing once again.

I have not stopped missing all that we were together. And there are times when confusion intensifies and builds a barrier between us. But I am learning to give thanks for what is…for the new ways we love.


I am about to do a new thing;
now it springs forth, do you not perceive it?
I will make a way in the wilderness
and rivers in the desert.
Isaiah 43:19