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

Lifted by Love

Photo: Norma Sessions

When I was a child, our family used to take day trips to the New Jersey shore. I enjoyed playing in the sand and the shallow, foamy water. The waves could be rough, though, and even though I knew how to swim, I was reluctant to venture out far—worried I would get knocked over and never find my way up.

One day my father, who must have been aware of my fear, convinced me to go out with him into deeper water. He led the way, navigating the rolling sea until we were in a calmer place, beyond where the waves break.

Holding both my hands, he let me experience how the ocean would gently lift us up and ease us down. Smiling, he said, “See? It’s so easy! It’s so nice out here…so easy…”

I cherish this memory of my dad, and appreciate its reminders of trust and peace. I can still feel the water lifting us up and easing us down. The memory has been especially comforting to me recently in my care of Dale.

Dale’s moods can sometimes fluctuate abruptly, like waves of rough water that I don’t see coming. His “ocean” of feelings shifts from calm to choppy and then back again with no obvious cause.

I can easily feel knocked over, sand and sea in my nose and mouth, struggling to find my footing and air to breathe. Even though I recognize the disease at work and know ways to cope, I sometimes lose my balance.

However, as in my childhood experience, others are present to help and reassure—through prayers, contacts, visits. They help “right” me, carrying God’s Love and reminding me that even in deeper waters, I am not alone. Love—like the buoyancy of salty ocean—continues to lift me.

“But now thus says the Lord,
    he who created you, O Jacob,
    he who formed you, O Israel:
Do not fear, for I have redeemed you;
    I have called you by name, you are mine.
 When you pass through the waters, I will be with you;
    and through the rivers, they shall not overwhelm you;
when you walk through fire you shall not be burned,
    and the flame shall not consume you.”
Isaiah 43:1 – 2

Still

The disease keeps moving, whether I am aware or not. Whether I accept it or not. That is its nature.

Its gradual movement creates an illusion of stillness: like the subtle changes in daylight that go unnoticed until suddenly (it seems) it is dusk…or like fog rolling across a lake until the water is covered and the shoreline invisible.

Photo: Norma Sessions

So it is with Dale’s latest changes.

Suddenly (it seems) he is sleeping more hours than he is awake; content to sit because standing and walking are challenges; leaving food items on his plate that he once ate with pleasure.

This transition feels shocking to me, despite the length of our journey and all the signs along the way. As I look back, I can see dusk approaching…the fog rolling in. I can see the gradual movement to where we are now.

But still, my whole being responds: How can this be? How can it be that our daily walks together have ended? How can it be that Dale is no longer my dinner-and-a-movie partner each evening? How can this be?

As I inch towards acceptance, I look up to see that there are guides along our way: hospice CNAs who bathe Dale with skill and compassion; chaplains who sit with us, pray with us; caregivers who bring smiles, experience, and helping hands; fellow travelers who know this place well and listen with deep understanding; friends and family who express love in myriad ways, lifting our hearts and assuring us that we are not alone.

And still, Dale is here…in his smiles and laughter, in moments of recognition and connection, even amid periods of intense confusion and long hours of needed rest. Still. Here.

“Still is still moving to me
And it’s hard to explain how I feel
It won’t go in words but I know that it’s real
I can be moving or I can be still
But still is still moving me
Still is still moving to me.”

From Dale’s favorite Willie Nelson song: “Still Is Still Moving To Me”

Music Lessons

During the early years of Dale’s diagnosis, we participated in a clinical trial at Emory. On the way to Atlanta for an appointment, I realized I had forgotten to pack something and mentioned it to Dale as I drove. He replied, “Well, you’re thinking for two now.”

Yes. It was a new reality. I was adjusting to it.

All the tasks we had shared as two would gradually become mine alone. Planning. Managing finances. Shopping. Meal preparation. Contacts with friends and family. My responsibilities expanded over the years as Dale began to lose the ability to care for his personal needs.

Now there are times of deeper confusion as language, emotions, and cognition are further disrupted. “Thinking for two” is not enough when the disease clouds his. 

So, I “tune in” by listening to his vocal tone. I watch his facial expressions. I notice the sound of his breathing. Sometimes my guesses about his needs are right; sometimes they are not.

Photo: Norma Sessions

It’s as if Dale is listening to music that I can barely hear. My attempts to join him in that music are improvised at best. There are times when I can discern familiar melodies—variations on themes that I know well. “Ah yes,” I think, “this is the music of Dale.” But other times the music sounds completely foreign to me. I have trouble finding the tempo or even the right key. And when I do, the music changes again the next day—or next hour—or sometimes the next minute.

As someone who prefers to have a musical score to read, the near-constant improvisation can be exhausting. I wonder whether I will have enough breath to keep going.

The only way through is to expand our duo and form a band. Thankfully, experienced players have joined ours. There are times when Dale’s caregivers hear the music far better than I do. While I may know “Dale’s theme,” they know the musical genre we are playing now. I listen to their riffs in amazement and gratitude. And when it’s my turn again, I can come in refreshed.

As we play, I learn the lessons of improvisation: Be in the moment. Listen. Match the emotion. Loosen up. Remember that mistakes are to be expected and are quickly forgotten. And as guitarist Joe Pass said, “If you hit a wrong note, then make it right by what you play afterward.” May we make it right for Dale.

More Than

Soon after Dale was diagnosed, we began considering a move to a continuing care community. While I knew the wisdom of this, I remember discussing my feelings of hesitancy with a friend. I said, “I don’t want to move to a place where people only know Dale as ‘that man with Alzheimer’s disease.’” My friend replied, “But if you move soon, they will get to know Dale as he is now.”

That is what happened. The progression of his disease moved slowly in those first years, and the people in our new community came to know Dale when he could fully engage in conversations and share his own story. Many grew to love him and still do, no matter the changes.

There are times when I still feel that longing for others to know Dale as more than a man with Alzheimer’s disease. Any new medical situation is where I sense it most acutely. There are usually only a few seconds to say the most basic things to the staff as we walk into the examining room: “His language comprehension is mostly gone. You will have to show him what you need him to do.”

However, I want to say: “This is Dale Sessions. He has been my beloved husband for 35 years. He is more than his disease. He has a story.

Dale is a man of courage and compassion. As a minister, he was not afraid to ‘rock the boat’ when advocating for issues of social justice. He was a chaplain who cared for people with the disease he has now…a pastor who walked beside many in times of illness and death…a skilled counselor with people suffering from mental illness and addiction.

When Dale asked how you and your family were, it wasn’t perfunctory; he really wanted to know. He was genuine and had little patience for pretense. As a friend put it, Dale could tell ‘chicken s*** from chicken salad.’

Dale loved to tease and laugh. He still does, although you may not be able to understand his jokes. Music fed his soul and continues to. He cared and loved deeply. He still does.”

Of course, outpatient medical offices are not set up to hear people’s stories. They are equipped to treat whatever the presenting problem is, and I am thankful for the expertise of those professionals. I am also thankful for care providers who treat Dale as a man who is far more than his disease.

As I write this on the eve of his 81st birthday, I am filled with memories of Dale’s story and deep gratitude for all that he was and is. May he know tomorrow—and each day—that we are happy he was born. May he know each day he is dearly loved.

That Which Abides

One morning several years ago, I noticed Dale’s wedding ring and another ring on the bedside table. Assuming he had just forgotten to put them on, I took them to him. He stretched out his hands, showing me that he had two other rings on them. I held up his wedding ring and pointed to his left hand. Nothing registered. I showed him my ring and how the two matched. Still no comprehension.

This precious gold ring—the one I had placed on Dale’s finger during our wedding ceremony—had, to him, become just another ring.

Clearly, the disease was on the move, cutting a wide swath through Dale’s brain, destroying long-held memories and separating meaning from things. Spoken words were becoming just sounds. Beloved possessions, simply objects. With no access to key parts of our story, the ring’s significance as a symbol of our union was gone.

During this same period, it seemed that I, too, was beginning to disappear from his awareness. He stopped saying my name, and no longer recognized it when others said it.

Who am I to him? I wondered. Who are we to one another if he no longer understands the concept of “spouse”? What is a marriage when I alone hold our story, remember our wedding, understand the symbolism of our rings?

Photo: Norma Sessions

Although who I am to Dale is not always clear to me, this is clear: Love—the reality we celebrated 35 years ago with an exchange of rings—still IS, no matter what Dale calls me or what he remembers from day to day. It does not live in the symbols that once had meaning to both of us. Love is embodied in our actions. Every day.

We continue to encircle one another with it, despite the destruction caused by this terrible disease. Love is expressed not only in my caregiving tasks but in Dale’s own actions and responses.

It is different these days. Sometimes disease-related confusion creates barriers. And sometimes my patience wears thin. But love still IS, and it is expressed in both new and old ways: A clasp of the hand. Patience when either one of us has to wait. Willingness, on his part and mine. Shared laughter. A look of recognition. A smile.

Concepts fade away. Symbols lose meaning. Love is what is real. Love is what abides.

“When you put these rings on each other’s fingers, they become symbols of your pledge to one another…that you will encircle one another with your love, your care, and your protection, that whatever happens, you can depend on one another…Your ability to give yourselves to one another is not perfect now, but you will learn to give yourselves more and more, until the gift is like the ring, continuous and whole.”
                                                                                      From our wedding ceremony, June 2, 1985

Finding Our Way

Ten years ago today, I sat alone at the Emory Alzheimer’s Disease Research Center, waiting for Dale to emerge from the room where he had been taken for cognitive testing. My heart dropped when I saw him walk toward me. He looked shaken. Defeated. I had never seen him that way. He composed himself a little as he sat down beside me, saying, “I never did well on tests like that.”

We had wanted to know.

And soon we did know: Dale had the same disease that had taken the lives of his father and brother.

Learning the diagnosis early enabled us to enter a clinical trial and motivated us to move to a retirement community.

But the news also shook me to the core. I felt as if we had suddenly been dislodged from familiar land and were floating out to sea. No oars. No compass. Adrift.

Photo: Norma Sessions

Similar feelings would wash over me with each change. What do I do? What’s next?? I wanted to know, to be able to see ahead, to understand. I read everything I could find that might enable us to chart our course.

What I learned was helpful. With every new sign of the disease, it became easier for me to imagine broken connections in the brain and respond with compassion. But there was a frantic nature to my quest…as if learning could somehow stem the tide of the disease…as if knowing would be our salvation.

In these early days, a friend said calmly, “We’ll be in the boat with you.” Those reassuring words were followed by regular calls and visits. Other friends and our family members reached out with similar words and actions.

It is this kind of knowing that has sustained us. Heart knowing. An awareness of need followed by a loving response.

There is no way to count the many acts of kindness we have received these last ten years. So many people have reached out with caring hearts, saying, “we are with you” through notes, calls, visits, shared memories, tears, and laughter. I picture them as lights on our path…buoys on rough seas…outstretched hands as we run this marathon.

Heart knowing uplifts. Provides hope. Helps me know that while there is a disease ravaging Dale’s brain, he is still here. Assures us that we are not traveling alone.

This is the kind of knowing that fills our hearts with gratitude, sustains us on our way, and is the compass for the journey.

“Love never ends.
But as for prophecies, they will come to an end;
as for tongues, they will cease;
as for knowledge, it will come to an end…
And now, faith, hope, and love abide, these three; and the greatest of these is love.”
I Corinthians 13: 8, 13

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