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.
