JOURNEY OF THE CAREGIVER

NEW RENAISSANCE – Sunday, January 14, 2018, 3-4.30pm

Journey of a Caregiver:  Opening to Love, Strength, and Acceptance

ZEN, ALZHEIMER’S, AND LOVE

by

Diana Saltoon

“To love what is.”  Embarking on the journey of a caregiver rewards us in many ways that are joyous, inspirational and spiritual. I recently co-authored with my husband, Robert Briggs, Wife, Just Let Go, a duo-memoir of an extraordinary love story that ended in a journey of Alzheimer’s. I was not only Robert's partner, friend, loving companion, and wife of many decades, but also became his primary caregiver as he struggled to cope with the disease that eventually took his life.

In a discussion group at New Renaissance, Portland, Oregon, on Sunday afternoon, January 14th, with interested caregivers and professional counselors, we explored the many trials, emotions, fears and frustrations encountered when facing terminal illness, becoming overwhelmed as a caregiver, and navigating the turbulent waters of grief and loss in the experience of the death of a loved one or a patient we’ve only just met but made a deep connection with.  Our group discussion was not a comprehensive “how-to-be-a-caregiver” meeting but rather a focus on how to better understand the “Journey of the Caregiver” in lifting and empowering a patient and, in the process, discover the core of our existence where healing, compassion, and peace exist.

During the discussion we shared stories and some of the gifts that a patient imparts that sustain us long after they’re gone. 

Our meeting was essentially in 2 parts with a break in between. In the first part we looked at some of the fears, emotions and trials that a caregiver generally faces. 

PART 1

Some points of our discussion were: 

The Diagnosis

Dealing with the reality of becoming a primary care-giver

Helpful tools

Research and recommendations

Getting help and support and especially respite care

Gifts of Alzheimer’s and the tenets of 3 A's: Awareness, Acceptance, and Appreciation. 

The following is what I shared with the group on my own journey as a caregiver.

The Diagnosis:

In Nov of 2011 just before Robert’s diagnosis we left our dear friends in Oregon we’d known for 20 years to start a life in New York with his daughter and son-in-law. Robert was already having a memory issue – which a doctor in Portland termed “mild dementia” - something that, at 82, Robert humorously said he was entitled to. However, when he suffered a bad fall in New York shortly after our arrival, we took him to a VA hospital where he had an MRI and was diagnosed with Alzheimer's. My immediate reaction was denial – even as I realized that the past few years showed something amiss with Robert’s memory lapses. “It could not be!” I thought. This was supposed to be our “golden years.” Why this? Why now? Why us? But, like it or not, it was a diagnosis we could no longer ignore.

Dealing with the reality of becoming a primary caregiver: 

I began an intensive research on the disease and connected with various organizations dealing with Alzheimer’s in New York, including the Icahn School of Medicine in Manhattan where research on the disease is still ongoing. Through the Veterans Administration Hospital in the Bronx, I enrolled Robert in a clinical study where he received medication and monitored care that helped for a little while to stem the progress of the disease.

Helpful Tools: 

Mainly I relied on the tools I gained in my years of practice in Zen meditation and Chado – the Way of Tea. Chado is a practice that many think of as the Japanese tea ceremony.  It is of course more than a tea ceremony. It's a path of peace and integration, of connecting with all kinds of people without exception. The culture of tea is rooted in genuine hospitality, and the spirit of tea is peace. Chado involves discipline, awareness and concentration, and is based on lifetime principles of Harmony, Respect, Purity, and Tranquility. 

The practice of Zen and mindfulness is focused on awareness, of realizing the truth of our co-existence with each other, with nature, and our planet. Through meditation we realize our interdependence in life, the impermanence that governs all things and begin to value the present moments of living. This kind of understanding brings natural gratitude and opens the heart to compassion and love.

Both Zen and the Way of tea are two pillars in my life that held me up through my journey as a caregiver for Robert. 

In our circle we discussed how others could use their own tools by calling on their own individual disciplines or practices, be they spiritual or otherwise, that help them cope with the intense caregiving requirements facing terminal illness.  

Research and Recommendations:

Among the many books and brochures that came to my attention as I searched for information on Alzheimer's were two books that helped me most in my journey: I'm Still Here by John Zeisel, PhD, and Joanne Koenig Coste's, Learning to Speak Alzheimer’s. I’d like to share some of the key points I learned from them that turned me around in Alzheimer’s care.

From Joanne Coste I learned about “habilitation” to put myself in Robert’s place and live in his world. Coste says, “A habilitated person with dementia can live using his or her upper limits of function, intellect, emotion and spirit.”  Both patients and care partners can feel successful at what they do, rather than feeling constantly weighted down. Coste prefers to use the term “care partner” or “habilitator” as opposed to “caregiver.” She makes a very key suggestion, to “listen to their eyes.”

When all else fails emotions still register with the Alzheimer’s patient. “Listening to their eyes," enables us to understand what they’re feeling and thinking behind the loss of their memory. We’re reminded never to judge, chide, or reason with anyone suffering from Alzheimer’s. The best possible way was to put myself in Robert's place, to experience the world through his eyes and appreciate the unique things that spoke to him. 

Keeping Robert as active and engaged as possible was a way to empower his ability to continue to do what he could do as opposed to what he could no longer do. The best possible thing was holding the memories and love we shared, filling in that loss. One of the things I did was to bring out a book he'd published and read or point out passages he'd written and the experiences we shared. I'd have photographs on hand to remind him of family and friends and cards received.  

Robert was a writer. Toward the end of his life he continued to write even when he lost words. He always held a pen or pencil and would pick up any scrap of paper to write something down that momentarily flashed in his mind. He used to do poetry reads accompanied by a jazz trio and had a wonderful cadent voice we loved to hear. I encouraged him to read a poem he’d written or an essay and it was like some part of him came alive when he picked up those pages and began to read, sounding much like his old self. For a moment he was out of that Alzheimer’s bubble until, setting the poem or essay down, he’d return to that bubble again.  

Getting help – respite care

Getting some support and respite care was essential. To find ways to take a break even if it was a hot bath, a quick walk around the block, or have a friend drop in and be with Robert while I ran errands, met someone for a tea or coffee, or had a haircut. I found some help with our medical program that allowed a few hours of respite care a week. Discussing this with our circle, I suggested that whenever a primary caregiver could afford it, to have someone from a caregiving organization come in and be with their patient while they took a break outside the home.  To not hesitate to call a friend who’s volunteered to help. However they managed it, taking some time for nourishing the self eases tension and allows for better communication and compassionate caregiving.

Gifts of Alzheimer's

I learned to recognize and appreciate the many gifts of Alzheimer’s and was much lifted by them especially after reading Dr. Zeisel's I'm Still Here. For example: learning to be emotionally open, to cherish memories, Robert's sense of humor. To accept help in respite care and take better care of me so that I could take better care of him. To pay attention and recognize the important of his familiarity in our home, living space, possessions. To enjoy the present, go with the flow of things, to cope with the complicated. To have greater insight into things he was feeling and expressing emotionally.  I learned a true sense of community, of a kinder world, especially with the help of friends who never hesitated to lend a hand whenever they could. We loved and enjoyed his humorous wit that remained with him. Being with Robert in his later stages of Alzheimer's brought deeper nurturing and realization of death and its acceptance. It made me experience the preciousness of life and to live in the present, in the now of the fleeting moments we'd never have again. 

The tenets of Zen

Or what I called the 3 A’s – Awareness, Acceptance, Appreciation: additional gifts for the caregiver. Awareness encompassed everything. For example, there was the awareness of Robert's sensitivity to voices around him, to tones, as opposed to words used. The attitude of any caregiver is honed when with an Alzheimer's patient. Soft tones, a mellow voice, a kind attitude, all express true compassion that arises when dealing with a loved one.  This kind of illumination is rewarding and priceless.

Acceptance may be a difficult choice, for it means to be inside the patient, to put yourself unequivocally in their place, in their eyes, to live in the living flow of now and to love what is. To do this required placing a great faith in our love, a love that transcended all conditions or measure. Love that demanded deeper, wider understanding from me beyond self-centered concerns.  

Appreciation naturally arose with awareness and acceptance. There was always the appreciation of Robert still being present, still with me - as he was. There was  his voice to appreciate when he'd read a favorite poem or passage especially when he was having a good day. He always looked for a scrap of paper to write with, to jot down a word, a line, for a poem that at some unknown moment would come to him. Robert’s greatest gift was his parting one – words to me he had attempted to write on a discarded envelope. The words that became the title for our book: Wife, Just Let Go. To me it sounded more than a request and has become another vow for me: to live in the present - in the Now. To let go of extraneous thoughts and possessions that trap me in an endless cycle of desire and regret. Yes, those words have become a path to freedom and peace.  

PART 2

After a short break, we returned to the 2nd part of our discussion: Hospice, Death, Loss, Grief, Despair, and Redemption.

TO BE CONTINUED