The Gift of Presence

By: Norma Sessions
Alzheimer's disease, Caregiving, Hope, Loss and Grief, Love, Nature, , , , 9 Comments on The Gift of Presence

As the anniversary of Dale’s passing approached, the “lasts” grew vivid. Remembering the evening I last heard his voice was the most painful. His exuberant presence had always filled a room; his absence created a cavern.

A loved one described it well: “There’s such gone-ness.”

That sense of void dominated my early days of grieving.

I had thought that the many losses of the previous decade would prepare me for this final one. With each disease-related change, there was an aspect of Dale that I missed. I had learned to live with absence amid presence.

But there was no preparation for the final loss: Complete absence. Emptiness. “Gone-ness.”

There were times when the darkness and emptiness seemed total…when the absence felt too much to bear. I missed him—every version of him. I still do. However, now I see that throughout these months, I have been accompanied. Although the emptiness felt complete, it never was. There was presence amid absence.

That presence was Love expressed in countless ways, shining light in the darkness. Again and again, Love appeared: through warm hugs, thoughtful gifts, and caring messages. Each one made a difference, and even the memories of them now lift my heart. Love came through music shared among family and friends, through visits and trips with loved ones. Love appeared through nature’s beauties and daily wonders. The miraculous camellia in full bloom despite winter’s chill portrayed Love’s enduring presence. Even a feisty little wren couple nesting in a birdhouse that had been empty for years provided signs of life and hope to me.

Recently as I was drifting off to sleep, I experienced one more. It was as if I knew deeply—just for a few seconds—that Dale’s love was with me and a part of me. Neither a touch nor a whisper, but something as gentle as those, it was as if his warmth and his smile were wrapped within me in a deep, abiding presence.

For this precious gift and for all the expressions of Love’s presence and light amid the darkness of grief, I give unending thanks. Truly: “So faith, hope, and love abide, these three; but the greatest of these is love.” I Corinthians 13:13

“What’ll I Do…

By: Norma Sessions
Alzheimer's disease, Caregiving, Loss and Grief, Love, , , , 13 Comments on “What’ll I Do…

…when you are far away, and I am blue, what’ll I do?“

I found myself humming this Irving Berlin song recently, and then realized that the lyrics reflect my feelings as I adjust to life without Dale. What will I do? How do I fit in this world without you?

Although episodes are not as intense or as frequent as they were in the early months of grieving, there are still times when I feel acutely disoriented. In my mind’s eye, I see myself flailing about, as if suddenly swept up by an ocean wave, and I struggle to find my footing, to sense anything solid.

The physical presence of the one who so often extended his hand to help me with balance is gone.

Not only is he gone, but my daily focus—my purpose, even—is gone, too. During the last years of Dale’s life, my role as caregiver was clear. It was how I lived. It was the primary way I loved.

Righting myself in the turbulence does not always happen readily. However, when I remember this advice from a friend in recovery, I can begin:

“Just do the next right thing.”

The reminder itself is centering. I stop flailing as I consider what the “next right thing” might be. Sometimes it’s as basic as eating breakfast or taking a walk. Other times the next right thing is to call someone or offer to help a neighbor. I find my footing again in these actions. I sense the ground beneath me.

As a young adult I fretted about whether I was in the right vocation. I spent time wondering, searching, looking for the “right fit.”

While preparing for a job interview during that period of my life, I was in prayer and these words came to me: “It doesn’t matter what you do; it’s with how much love you do it.”

May I remember this every day and know more and more: loving actions center my life. It is here where I find ground under my feet.

“Walk in love, as Christ also hath loved us…”

(passage from Ephesians 2 that was on the front cover of our wedding bulletin)

Where Are You?

By: Norma Sessions
Alzheimer's disease, Caregiving, Hope, Loss and Grief, Love, , , , 9 Comments on Where Are You?

I was at a meeting for Alzheimer’s caregivers when Dale called. There was fear in his halting voice: “Where…are…you?”

It was a first.

It was also a last. I could no longer leave him alone.

Now I am alone, and Dale’s words are mine: Where are you?

Weren’t you just here? Wasn’t I just preparing your lunch…singing and laughing with you…helping you get ready for bed? Where are you?

Although the words come directly from my grieving heart, they also seem crazy. I was with Dale when he died. I composed his memorial service. I helped bury his ashes.

And yet, the feeling that he should still be here can be strong. It’s easy to “hear” his resonant voice, to “see” him sitting next to me, or to just assume he’s resting in another room. All of our years…working, living, loving together…wove countless threads of a shared life throughout my being. The tapestry of “us” is part of who I am.

As we lived with Alzheimer’s, a tighter weave was created. In the last months of Dale’s life, nearly every breath I took was focused on his care, such that soon afterward I asked: How is it that I am still breathing and you are not? It made no sense to my shocked being.

Sometimes it still makes no sense. There is discomfort, awkwardness, and even resistance as I live into a life without his physical presence. And yet, with each step, I gain strength. These new experiences help me heal.

As I make my way through the grieving process, I realize more and more the answer to my question: Dale IS here…in my memories of special times together…in my sense of awe when I see the clear blue sky and my heart leaps, just as his did…even in my voice when I repeat one of his sayings and follow it with laughter.

The threads woven through my being remain. Our love endures. May I honor and celebrate it as I move forward…weaving new patterns into my life that incorporate the beauty of all that we shared.

Transitions

By: Norma Sessions
Alzheimer's disease, Caregiving, Loss and Grief, Love, , , , , , 8 Comments on Transitions

The movement of Alzheimer’s disease is uneven. Sometimes abilities are lost and then return, only to be lost again. It can be difficult to know when something is finally gone. Until it finally is.

This is my reality now.

As parents mark precious “firsts” in their children—first smile, first words, first steps—I have now marked “lasts” for my beloved Dale: last steps (October 25), last smile (November 3), last breath (November 9, 11:36pm). He was at home when he made his final transition. He was peaceful.

There was a shift to some other space and time during those last days of Dale’s life. I functioned as if in a bubble that cushioned me from the shock of what was to come…following instructions from the hospice nurse…facilitating calls and visits from loved ones. I talked to Dale, telling him how much I loved him and what a brave man he was. I recited the 23rd Psalm and the Lord’s Prayer. I sat beside his bed and sang hymns.

And he sang to me. One last time.

When the disease removed Dale’s vocabulary, he replaced it with his own words. They were almost always happy and upbeat, often rhymed, and were strung together in sing-song-y ways.

One last time I heard them. It was also the last time he looked at me and smiled. His voice was a whisper, but that night he sang to me: those sweet rhyming words. Happy and peaceful.

Dale’s last transition on his journey with Alzheimer’s disease mirrored his first. He had faced the enormity of his diagnosis with acceptance, writing soon afterward of his “trust in God’s Grace and God’s guidance.” He walked the journey this way, too: with acceptance and trust.

His way is a model as I make my own transition and adjust to life without his physical presence.

Like his disease, the movement of grief is uneven. Sometimes I inch forward, creating a new pattern for myself, only to be triggered—by a memory, a song, an item of his clothing—into the intense pain of loss. During those times, I miss him, every version of him—Dale before his disease and Dale during the journey. I miss his broad smile, his warm hugs, his loud voice, his big, hearty laugh.

Sometimes in the silence, I remember his reality checks and hear again what he said about his condition:

“Okay, this is it. I don’t like it. I didn’t want it. But I’ve got it. And I’m going to do the best I can with it.”

And again, I say, “Me, too, Dale. Me, too.”

https://www.whitakerfuneralhome.com/obituaries/Dale-Robert–Sessions?obId=23049978#/obituaryInfo

Love Song

By: Norma Sessions
Alzheimer's disease, Caregiving, Loss and Grief, Love, Music, , , , , 8 Comments on 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?

By: Norma Sessions
Alzheimer's disease, Caregiving, Loss and Grief, Love, Marriage, Memory, , , , , 6 Comments on 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

By: Norma Sessions
Alzheimer's disease, Caregiving, Loss and Grief, Love, Marriage, , , , , 7 Comments on 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

By: Norma Sessions
Alzheimer's disease, Caregiving, Love, Memory, , 4 Comments on 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

By: Norma Sessions
Alzheimer's disease, Caregiving, Loss and Grief, Love, , , 4 Comments on 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

By: Norma Sessions
Alzheimer's disease, Caregiving, Love, Music, , , 10 Comments on 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.