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.

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.