Attending Rosalynn Carter Summit on Caregiving

One of my passions when I was working as a chaplain was providing support for caregivers.  It still is.  Last summer when I discovered that the 30th Anniversary Summit of the Rosalynn Carter Institute for Caregiving would be held in October in Americus, Georgia, I decided to register.  I’m glad I did.

It was a sold out event, including various opportunities for learning and inspiration, including a one-woman play about the life of former First Lady Rosalynn Carter as well as workshops and panel discussions on education, advocacy, research and support for caregivers.

Most inspiring for me took place Friday morning when these three women spoke: Rosalynn Carter, Sandra Deal, wife of Georgia Governor Nathan Deal, and Lee Woodruff, contributing reporter to “CBS This Morning” and Co-founder of the Bob Woodruff Foundation spoke.  All three had been caregivers and knew personally the difficulty of giving care and how much caregivers need education and support.

As Rosalynn Carter has said, all of us fall into one of these categories: 1) We’ve been a caregiver, 2) We will be a caregiver, 3) We are currently a caregiver, or 4) We will need a caregiver.  With a large percentage of the population growing older, caregiver support and education is needed more than ever.

To learn more details of the Summit, go to http://www.rosalynncarter.org/30th_Anniversary_Summit.

Caregiving Building
Photo by JStanton

Carter sculpture
Photo by JStanton
Carter at podium
Photo by JStanton

 

The Journey of Grief

Once in a while I read a book that’s more than good or even great.  Over the course of years I’ve read a few books that seemed to have deep personal significance and whose impact usually took me by surprise.

I just finished such a book.  Letters from Motherless Daughters by Hope Edelman is a compilation of letters written by daughters whose mothers have died, whether in the past year or more than twenty years ago.  Having lost my mother thirty-five years ago, I was interested in following the reflections of these women.

I could not put this book down.  The letters, written with passionate, emotional honesty and depth, expressed the grief they experienced–and still experience—with their mother’s death, and how it had influenced the future direction of their lives.   Many felt that the choices they made (not always good), other familial relationships (sometimes troublesome), and their own mothering issues were influenced by their mother’s death and the grief that followed.  Their stories testified to the fact that grief is not a linear process, but a cyclical journey. 

One of the most interesting things I learned was something called the “correspondence phenomenon.”  Coined by psychologist Therese Rando, correspondence phenomenon refers to the threshold when daughters reach the same age when their mother died.  Like a spark in the night, this ignited my attention.  I suddenly realized that I’m now at the age of my mother’s death.  I wondered, Is this why I’m drawn to reading this book about motherless daughters?   Is this why, a few months ago, my grief surfaced, unexpectedly, as I sat on my back porch facing the woods?  (See “The Wisdom of the Wild Woods”).

Reading Letters from Motherless Daughters was a spiritual experience that centered me deeply.  My feelings of grief were unearthed, and I usually read with damp eyes, but it was not a sad experience.  Instead, I learned more about myself, and I felt grateful to have discovered the quiet grief—and the continued love– I still carry for my mother.

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A Smile As Unexpected Gift

Her head hung low when I first saw her.  She sat among other nursing home residents in a large gathering area, a television game show blaring nearby.

A few days ago, the hospice volunteer coordinator had called me and asked if I’d be interested in visiting Ann (not her real name).  “I’m not sure if she would benefit from visits.  Her son told me that she doesn’t seem to know when he’s there. If you decide to go see her, I’d like your feedback.  Let me know what you think.”

I was willing to try.  As a chaplain, I have sat with people with varying conditions and cognitive abilities.  The fact that she suffered from dementia and was no longer communicative was not new to my experience.  “Sure,” I said.   “I’ll be glad to visit her.”

When I first arrived at Ann’s residence, I asked the nurse to identify her for me.  She pointed to a thin, white-haired woman, sitting in her wheelchair. Her head was drooping low but she was awake.  I spoke her name, introduced myself, and pulled up a chair beside her, but I soon realized that we needed a quiet space if we were to have half a chance at a meaningful encounter.  With the nurse’s permission, I wheeled her to her room.

During our time together I took her hand, offered reassuring words, played music, and read poetry to her.  She did not seem to respond to my efforts.  Her head continued to hang down, and only occasionally did she look up, groan with a soft cry, and return her head in a downward position.

At the end of our visit, I returned her to the large room where I initially found her.  I thanked her for our time together and told her goodbye.  At that point, she looked up at me for the first time and smiled!  Surprised and moved, I felt the warmth of her smile, and I knew that I’d return again.

Sometimes we wonder if it’s worth our time and energy to visit someone who cannot communicate or will not recognize us.  However, I believe that presence has more power to communicate care and compassion than we may realize.  Though we may not speak words or hold a conversation, our “just being there” can be deeply and intuitively felt, alleviating the loneliness of a hurting heart that yearns to be acknowledged and known.

Sometimes, though, our humanness needs a sign or small gesture to encourage us and let us know that the time we took out of our busy day was worth it.  Her smile did that for me.  She gave me a gift that day, a gift that has become a precious memory.

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Caregiving: Grief as Self-Care

Each month I lead a support group for family caregivers.  Our discussions cover a number of topics about the art of giving care:  spirituality, ambiguous loss, grief, family dynamics, compassion fatigue.  But there’s one topic I haven’t introduced since the early days of the group: self- care.

Why?  Why have I avoided this important topic?  Surely self-care is an important and necessary facet of avoiding burnout.  Surely the wisdom of self-care teaches us to take respite time, do something enjoyable, exercise, eat nutritiously, link up with supportive friends.

So why not talk about it?

I haven’t talked much about self-care because each person in the group, being the wise and experienced caregivers they are, knows all the typical advice.  And they practice it well.  They don’t need a refresher course.   In fact, they could teach it to others.

But recently I read something new about self-care, a thought I hadn’t considered.  It comes from Dr. Rachel Naomi Remen in her book, Kitchen Table Wisdom.* She states:

People who really don’t care are rarely vulnerable to burnout.   Psychopaths don’t burn out.  There are no burned-out tyrants or dictators.  Only people who do care can get to this place of numbness.  We burn out not because we don’t care but because we don’t grieve.  We burn out because we have allowed our hearts to become so filled with loss that we have no room left to care. In my experience burnout only really begins to heal when people learn how to grieve.  Grieving is a way of self-care.  (pp.52-53)

I read this to my support group and asked them what they thought about this perspective.  They agreed with Dr. Remen.  And so do I.  Trying on stoicism, pretense, or toughness doesn’t help us work through the myriad feelings of grief. Expressing our grief does.  Grieving is self-care.

The hard work of grieving releases pain and opens up an inner space for the life-strengthening attributes of relief, comfort, and even peace.  While we may not want to be in touch with difficult feelings, or express them, it is by engaging in our grief that connects us to our deeper selves.   And when we do this, we discover a strength that carries us forward into the hard work of caregiving.

Grieving is a form of self-care.

*Published by the Berkley Publishing Group, 1996.

Daily Stressors and Clutter Control

Clutter:  a disorderly heap or assemblage; a state or condition of confusion.

–      Dictionary.com

Controlling clutter is a daily task.  At our house clutter is a constant threat, especially with papers.  Mail to open, bills to pay, schedules to check, and work to administer all pile up and beg to be sorted, prioritized, or simply thrown out.

I’ve discovered, though, that clutter doesn’t just exist in our outer world.  Sometimes I experience an inner clutter that can accumulate in my mind, my body, and my emotions.  Usually I feel inwardly “cluttered” as a result of going through an intense time:  too much to do or too many details to think about.  In other words, an accumulation of stressors builds up.  My guess is that I’m no alone.

Inner clutter can linger for a while.  Even after I’ve cleaned up the desk, sorted the mail, and found misplaced items, I can still feel that sense of clutter.  I don’t like that feeling so I try to find ways to “declutter.”  Here are some strategies that have helped me:

  • Exercise.  Moving one’s body and exercising one’s muscles are good for almost everything.  We know that exercise increases the immune system and elevates our mood.  I like to run, and when I do, I feel more relaxed, more in control.
  • Meditate.  Quieting the mind and letting my thoughts come— and then go—without trying to control them can be a great help.  After, say, twenty minutes or so, I feel more relaxed and my outer perspective has improved.  The stressors that seemed insurmountable don’t seem so overwhelming.  Sometimes simply sitting with quiet music or reading a thoroughly engaging book can have the same effect.
  • Sleep.  When I become more fatigued, my sense of inner clutter increases.  But when I take a nap, or go to bed early to get in a few extra hours of sleep time, I awake feeling rested and things seem manageable.  Sleep has a way of resting the body and “emptying” the mind, allowing new and creative thoughts to emerge.  In fact, I thought of writing this post on this theme when I first awoke this morning
  • Recreate.  Whether this means playing a game or having coffee with friends, redirecting the focus of our energies is a big help.
  • Do something creative.  When I speak to grief groups, I sometimes ask: How do you like to be creative?  Sew?  Work with wood?  Draw?  Write poetry?  I’m convinced that creativity is healing, and it’s a great resource for those who mourn or are caregivers.

 The next time I feel that sense of overwhelm, clutter, or exhaustion, I may go back to this list to remind myself that I can take action and find ways to resume a healthy and less stressed life.

It’s the way I want to be every day!

Remembering Dad on Fathers’ Day

“Aging can be a growing into the light.”
–Henri Nouwen

During the latter years of his life, my father, Robert Perry, was drawn down a path of numerous losses, beginning with the death of my mother, his beloved spouse for over forty-four years. They had shared a meaningful, interconnected life of much hard work and some play, raising two daughters, and battling my mother’s persistently poor health. When she died, he struggled with enormous grief, and in spite of his earnest attempts to pursue a satisfying life without her, his life had simply lost its luster.

Six years later my father decided to sell the house they had once lived in together, leaving behind many memorable possessions. His new, small apartment served him well for several years, but breath-taking emphysema hastened the decline of his general health until he could no longer live alone. He sobbed uncontrollably the day he left his apartment for a nursing home, grieving the loss of freedom to make his own decisions, to come and go as he pleased, to live independently. Letting go was excruciating.

Dad 1985-croppedSoon after entering the nursing home, Dad slipped and fell in the bathroom, fracturing a hip that never healed and never allowed him to walk again. Confined to a wheelchair the rest of his life, he could depend only on others to assist him with his most basic needs: getting in and out of bed, getting dressed, arriving for meals, taking proper medications. Meanwhile, his body grew weaker over the years, shedding precious pounds it could not afford to lose. Little by little, life was losing its vitality, its energy, its flavor.

But I noticed that this season of grieving had produced abundant fruits of growth. Though painful losses had incessantly intruded upon his life, his spirit expanded in remarkable ways. Gradually he had grown into a more gentle, kind, and patient man. He did not demand more of others just because he could do less. He expressed genuine appreciation for even the small gestures of others’ kindness, and his sense of humor made others smile. Though his plentiful, persistent losses caused him deep, groaning pain, my father had grown into the light. What he did not realize was that, in spite of our difficult past, he graciously shared that light with me and with those who cared for him.

“If there is to be any peace it will come through being, not having.”
–Henry Miller

When I visited the nursing home to see my father in his small, comfortable room, he was usually wearing a maroon cardigan that warmed the constant chill of his body. Most of the time he did not feel well, but he smiled anyway, delighted to see me. His quiet, calm presence drew me in. His thought processes, like his physical movements, had slowed down so that our conversations were interspersed with frequent silences. These silences were neither awkward nor alienating; rather, they transcended the barriers and limitations of language. Like seeds scattered upon the soil, our shared silences cultivated a harvest of what I had always craved most in our relationship: friendship, love, and intimacy. These were his gifts to me, effortlessly given from the center of his being.

At the close of each visit as I gathered my belongings, I felt within me a profound, penetrating peace. Without realizing it, he demonstrated to me that the peace the world cannot give is not achieved by our accomplishments, false masks, clever strategies, or a life without challenges. This is the peace that originates in the still, tiny nucleus of our being, where we are both painfully and joyfully human.

Looking at Reality: It Is What It Is

Impatiens in backyard. September 2012.
Photo by JStanton

“It is what it is,” she said to her friend as I was passing by, on my way to the annual arena sale near my home. 

Seems like a popular phrase lately, at least to my ears.  I hope this phrase—it is what it is— is not in danger of becoming a trivial one, like many often-used expressions, because I’ve learned that when people say this phrase, they’re not referring to some trivial occurrence but to a difficult, if not grave, circumstance in their lives.  I hear it from mourners and caregivers, those who have suffered major loss, and when I hear them speak these words, I know there’s more.  There’s more story to be told.  Simple words; complex situation.

So I seek to listen more closely, trying to remain open and porous so that the deeper significance of these words soak in:  a parent admitted to a nursing home, a spouse diagnosed with early Alzheimers, a longtime marriage ending, a bank account drained dry, a teenager recovering from addiction. 

And then I begin to wonder, how long have they been on this particular journey? How long has it taken before they could say, “It is what it is?”  Probably awhile.  Maybe a long, long time.  The grief-filled road leading from denial and false hopes to honesty and acceptance is long and winding, requiring every last ounce of courage to say it is what it is.   To utter these words, it seems to me, requires a stark encounter with our powerlessness over that which we had hoped with all our might to change, but now know that we cannot and never will. 

But powerlessness does not mean despair.  Paradoxically, when we name our powerlessness, we claim our power.  When we are able to speak with stark honesty to the full significance of our struggle and relinquish the comfort of false hopes, we access a powerful, inner strength.  We stand at the threshold of hope, based not on wishful thinking but on reality. 

With feet firmly planted in the ground, we embrace the genuine hope  that enters our hearts as we begin a new journey:  life at a depth and significance that we would not have known otherwise.

It is what it is.