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Independence and Interdependence

May is the month of graduations and Mother’s Day.  As my son prepares to graduate from middle school, I find myself noticing his maturity and expanding capacity for observation and thoughtful participation in the wider world. I am a proud mother, happy to see his wings unfolding to test the wind as he grows. I am also aware of my tendency to confuse maturity with independence and notice my growing skepticism of how we define independence. Our totems of independence often seem solitary, stoic and hard-fought. Rarely do we recognize and embrace that independence emerges alongside ongoing reliance on others and the need to remain receptive to accepting and even seeking input, help, and guidance from others. But we could…Imagine the shift for our growing children if we congratulated them on their accomplishments, noted their independence and celebrated their ongoing need to be supported. They might take their next steps more fully aware and accepting of the reality that they will both give and receive for the rest of their lives. Imagine the shift for all of us, our families, and our communities if we celebrated our interdependence.

Our cultural appreciation of independence is subtle and pervasive. At a college graduation, we congratulate young people on their achievements and wish them well in the world. There is no denying that each individual’s tenacity, desire and hard work were the critical guides through their school process, but rarely is education — or life — a solitary experience. Graduation speeches always acknowledge the families, friends, mentors and faculty who supported students in meeting their goals. Most speeches encourage and embolden graduates to have a positive impact on the world as they move along their life’s path. In our messages of “congratulations” and “good luck”, we imply somehow that the pathways ahead will be individual. We remind them that they will work hard and face setbacks as well as rewards. We imply that, done right, the life ahead will include financial independence, setting and meeting goals and some degree of personal satisfaction. There’s usually mention of a “good job” and of the myriad ways in which graduates will make contributions to community and family.

After I graduated from college, I recall taking great pride in being able to pay my own rent and buy my own groceries. My budget was meager, but it was mine. I did not have a clear sense of what I wanted to offer the world and was not particularly driven to find a “good job.” I was content to have a job that paid my bills and a chance to take a breath and focus inward. I had been in school for most of my life and, for the first time ever, I could set and meet my own goals. I trained for and ran a marathon. I had the time and inclination and I wanted to test my capacity to set and meet a goal that had not been delivered to me by a teacher, parent or friend. It seemed novel. I dove into a self-satisfying, perhaps even selfish, independence. I felt the need to test my capacities and explore curiosities. This independence could have been completely solitary if it were not for a few strong friendships that enriched and nourished my sense of self. It only took a year or two before I moved back into community with care and attention to what I had to offer, but it took almost 10 years to recognize the supports and strengths that I gather from my family and community on an ongoing basis. I now notice and embrace the strength and value that exists in openness and vulnerability as well as in independence and decisiveness.

When Thomas and I led trail crews for SCA almost two decades ago, we spent a lot of time and attention on the development of a cooperative, collaborative crew. Leading a group of 6 high school students in complex manual labor while living in the wilderness required attention to individual dispositions while also developing a strong group ethos. Each individual need to work hard, advocate for him or herself and be willing to put personal wishes aside in deference to group needs from time to time.  Living in bear country, we all had an obligation to be aware of our surroundings and the whereabouts of our crew-mates at all times. We shared in all responsibilities of work and camp life and students and leaders alike took turns teaching, learning, guiding, planning, cooking and cleaning. This heightened awareness and cooperation was a matter of safety and comfort. It also made our relationships stronger, our work highly effective, and our lifestyle deeply meaningful. Each summer, Thomas and I learned at least as much as our students did.

More recently, when my family stepped in to support my Dad as he was declining with dementia, we were very worried about imposing on his independence by inserting our opinions and “help” in his life. If he said he was fine, who were we to argue? After all, it was his life and he had the right to live as he wanted. But he was becoming anxious, depressed and nervous. Worse, he was losing weight and suffering from skin and digestive problems. It became crystal clear to us that he was not fine when on top of all of these changes, he was clearly no longer able to safely navigate a day in his home and neighborhood. We finally stepped in and pushed him into a move to a graduated care facility. There he began to flourish. He became more and more of himself again — kind, generous, gentle, careful and thoughtful. Over the next three years, he moved twice as his needs advanced. In each move, he blossomed out into the space created by the new, closer boundaries. For my Dad, living in a community of people became a new pathway toward self-actualization. We had been so steeped in the mythology that independence was some sort of optimal mode of living, that we had not even considered the possibility that some select dependencies would re-open pathways to a fulfilling life. Once Dad’s basic needs were met, he felt safe again and returned to the work that had been meaningful to  him throughout his life, caring for others.

Maslow’s hierarchy explains why both Dad and our trail crews flourished in highly structured community living. I had seen this social theory before, but had not embraced the reality that basic and psychological needs are sometimes best met by communal effort. The increased risks imposed by dementia in one case and by wilderness on the other were alleviated by increased management and responsibility distributed amongst a number of community members. In a trail crew or in assisted living, one person can start cooking dinner while another breaks into song. Both individuals are contributing to the health and sense of safety of their community, meeting the basic needs of others while, utilizing their talents, they are moving towards self-actualization.

Many schools have given a lot of lip service to collaboration and cooperation in recent years, touting these dispositions as valuable traits for the workplace and helping students to practice them in carefully constructed projects and lessons. But the give and take of community is important, not just in discrete projects or in our work, but in all of the relationships and activities of our our lives. At the Putney School, students gain awareness and respect for their role in community as they participate in the work that sustains the school while maintaining their academic studies. A student’s afternoon may require balancing algebra homework, lacrosse practice, washing dishes in the cafeteria, and cleaning the common room of his dorm. It is an unusual model for a school, but it mirrors “real life”. In a community, we always have responsibility to others, and are always being served by others as well.

In Maine, a small group of dedicated volunteers is building a new senior living facility that is designed and sustained by the ties that connect people to one another. Inn Along the Way is a “collaborative community offering older adults, and those seeking temporary relief from the responsibilities of caregiving, an environment of support, purpose, and sustainability in a multigenerational and mutually interdependent setting.” Maybe it’s a sign of my middle age, but mutual interdependence sounds much more comforting and more rewarding than independence. The vision of Inn Along the Way seems like one worthy of striving towards integrating into our lives regardless of our age and stage.

In Being Mortal, Atul Gawande juxtaposes the 3 and 4 generation homes that persists in his ancestral home, India, against the one and two generation homes that are more common in the U.S. He describes the advantages and challenges of each. Yes, it’s messy either way, but something sounds more natural in the homes and lives of his relatives in rural India. Being surrounded by family members keeps safety nets close and expands rather than contracts each individual’s reach in the world. Gawande’s description is a good reminder that the interdependence that is central to the mission and practices at places like Putney and Inn Along the Way is not new for people, but it has become less common in some cultures over the last two generations.

A healthy ecosystem depends on many interconnected parts, logically, a healthy human system would as well. Perhaps a close look at changing habitats will offer some clues into the potential pitfalls and successes of our changing patterns of lifestyle and relationship and how we might wish to shape them. I’ll leave that exploration for another time. For now, I am content to reconsider the ways in which I practice and honor mutuality in my life.

We all live in reciprocity, constantly both giving and receiving despite the cultural myth that celebrates independence as a sign of optimal functioning. The risks we take by being vulnerable and open to the service of others are nothing compared to the risks we take by honoring individual independence above our community. We rely on family, friends, neighbors and strangers every day — and they are relying on us.  What would it take to rebuild our human connectivity? We can start one relationship and one family at a time. There’s no need for isolation. We are in this together.

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Sunrise

I have been watching sunrises this week.

I start my daily yoga practice as the night sky is just beginning to lighten. After building up the fire in the wood stove, I roll out my mat and begin. This moment, before the sun has risen and before the day has built its own momentum, is quiet, solitary and full of potential.  But this potential is not a beckoning toward the future, it is a fullness of the present.

I take a few deep breaths and feel my feet settle on the earth.  I am grateful to be awake, in my body and fully receptive to this nascent moment.  As I move through the sequence of sun salutations that begins the ashtanga practice, the sky lightens further. 

By the time I am halfway through the standing sequence, strokes of color begin to travel across the sky.  Oranges, pinks and reds dance across the clouds and sky in a constantly changing splash of color.  I pause for a deep breath and a longer look.

With a grateful sigh, a smile and a light heart, I always return to the yoga practice after a minute or two.  After all, I am supposed to be exercising.

As I move through the poses, I feel my physical and mental energy growing stronger and more flexible.  The growth builds throughout the practice each day, and each day’s effort rests upon the work of the days, weeks and months that came before. Yet each day’s practice is also solely its own, complete with its own particular distractions, surprises and sunrises.

Eventually, a rogue thought breaks my concentration and my gaze moves to the window again.  Inevitably, a pang of surprise and disappointment sweeps through my body. The sun has risen above the horizon and the brilliant display that had filled the sky just moments before is gone.

But of course it’s gone. Nothing lasts forever. Change is our constant companion, usually accompanied by awareness, appreciation and apprehension. This truth takes me by surprise each and every time it presents itself.

The display of beauty cast by the interactions between sun, clouds and earth was not only vibrant and awesome, but also fragile and fleeting.  This time, as I turn back to the mat, I sigh a little deeper.  Of course the sunrise was temporary, but each time I witness this passing moment, I feel surprised by a feeling of loss. The peak color display of the sunrise actually lasts for 10-15 minutes.  That’s long enough to watch subtle changes and variations over time.  That’s long enough to feel connected to and protected by the largess of the universe. After the sun has risen, it is just me and my yoga mat again. For a moment, I regret that the sunrise is no longer with me. Its departure is a not so subtle reminder of the other losses and blessings that have graced my life.

But that moment passes too. A new moment has arrived and it requires my attention. By this time, I am nearing the end of the sequence.  In the final poses, I sink in with deep intention. Body, mind and heart come together with strength, clarity and integrity. As I move, I hold lightly to the beauty and the loss of the sunrise and countless other tender moments from past and future. Each pose holds only my body, my breath and the universe’s infinite possibility.

When I reach the end of the sequence, that feeling of loss arises again. My hour for yoga, my quiet sunrise time, has passed. For a brief moment, I notice the sadness of letting it go before smiling to greet the new moment that is arising. The sleeping house is beginning to stir and there are more tender surprises ahead in each moment of this new day.  But first, it’s time to brew the coffee.

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Dying Days

December 2016

Dad’s last four days were heavy with emotion.  My brothers came and we settled in to keep Dad company.  We were there to bear witness to his dying, hoping to ensure that he felt surrounded by love as he left life and providing living proof that his life had been worthwhile.  All 4 of his children were there. His work was done. He had raised us to be conscientious, responsible adults and we were now raising our children in that same effort.  Our presence reflected the same values that we had seen paramount in Dad’s life: family, hard work, patience, persistence, honesty, goodness and kindness. The chaplain read the Last Rites while my brothers and I laid hands on his pale, still body willing our love to transfer directly to his heart and spirit.

For 3 days his breathing became slower and shallower.  It seems that the hospice and residence staff told us “it won’t be long now” every 12 hours.  For a whole afternoon, we counted 5 shallow breaths in a row and waited 10, then 20 then 30 seconds before another series of breaths would continue.  The medication nurses came in every four hours, then every two and finally every hour to provide him with pain medication that kept him from gasping for air and wincing with the struggle.  The residential staff would come twice a day to bathe him and change the  bed clothes. They tended to his body with the same loving care with which my brothers and I hoped to tend to his heart. 

The days and nights that the 5 of us spent in that room merged together.  We alternated between talking and silence. We talked about our kids, our jobs, our spouses.  We reminisced about other family members and meaningful moments of compassion and grace that our Dad had shown.  We took turns holding Dad’s hands or rubbing his back.  We told him over and over again how much we loved him, and thanked him for the life and value in life that he had given us.  The staff began to encourage us to get out for a while and we tried to balance the desire to provide support for Dad with the desire to give him space.  It turns out that many parents won’t die in front of their children, protecting them even as they are dying.  That seemed likely for Dad. He had always carried his burdens stoically, alone and out of sight.  We created opportunities to leave the room and said good-bye for the last time each time that we left.  We lingered over lunch and dinner.  We took long walks and drives.  Finally, two of my brothers said truly final goodbyes and went home to their families with tears in their eyes.  My husband arrived and sat with Dad for a few minutes, assuring him that he would take care of me and thanking him for the guidance, love and encouragement that he had given us as a couple and as individuals.  We went to dinner as the staff came in to clean Dad up for the night.  As we walked past the window outside, we could see the two young caregivers shaving his thin chin.

As my brother and I got back from dinner that night, Dad was breathing steadily. I realized that I had been clinging to his dying just as I had previously clung to his living. I had given time, energy, care and support in our caregiving relationship and as he moved towards dying, I continued to be right there. But I was still hanging on to that. And as he lay dying, I saw my place firmly among the living earth and realized that I needed to release myself from the tether that our relationship had become. I suddenly worried that somehow I had made it harder for him to die because I was still holding on to our relationship so tightly.  Life is all that we know, letting go of it was clearly hard work for him, but maybe it was for me too.  For the last few years, Dad’s life had been only the present moment. Aspiration, regret, fear, longing and relationship were my projections, not his realities. As I said good night that night, I said good-bye for real and assured him I was really ready. I was. And so was he.

As the evening wore on, we heard his breathing getting quieter, shallower and slower as we were falling asleep. Dad died with the same gentle strength that he had lived with, slowly and quietly.  He slipped away early that Saturday morning while we were sleeping just a few feet away.  It was very like him to wait until we were not paying attention and exit quietly.

Dad’s body was washed and dressed one final time. We lingered, waiting for the funeral home to come to pick up his body, wanting to be sure we ushered him all the way through the process. But a snow storm was approaching and we realized that there was nothing left to do. In the hallway, we could hear caregivers and residents beginning to prepare for the day. It was time for us to leave.

When we stepped into the still dark morning, fresh snow falling, I took a deep breath. The fresh air felt good and the world appeared familiar. That was reassuring because within that world, I had felt an earthquake. My perceptions had shifted dramatically and irreversibly. I did not immediately understand how or why, but I knew that my heart, mind and body had experienced something wholly new, all mine and completely universal.

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A Moment of Grace

November 2016

Dad was declining rapidly. There didn’t feel like much I could do besides keep company, bear witness, continue to show up. It was the only way I knew to give my love and care at this point. I arranged for the hospice chaplain to offer my Dad the Sacrament of the Sick. While I am not particularly religious, Dad had been. In his early adulthood he had been a member of the vestry at our church. I wondered if the words of the Sacrament would bring him solace, and if they would help his body, mind and spirit to unify in recognition that his dying process had begun.

Sadly, when my Dad had begun to decline with dementia, he had not had a doctor who could or would openly discuss what was going on with his body.  Nobody ever discussed with him the fact that his condition was terminal, that his body’s systems would close down one at a time until he died.  It was clear enough that memory, reasoning, and emotional regulation were declining, but those were our only focus.  We never discussed with him the reality that his mind would eventually be unable to communicate with his limbs, mouth and throat.  Complex activities like standing up, walking, chewing and swallowing would become challenging and then impossible.  But this eventuality was never discussed.  Perhaps it would have been too much to process with the limited mental capacity that he had.  But it felt unfair, after years of suffering with a terminal illness, that he should arrive at his dying without any mental, emotional or spiritual preparation.  If he had regrets, gratitudes, longings or concerns, he had never been offered an opening in conversation to communicate them.

He had been mostly non-verbal for a few months, so could not tell us what he felt.  If he spoke at all, the words were not only incoherent, they were mumbled or whispered. He was often lightly asleep in his wheelchair when I arrived for a visit.  Sometimes he would acknowledge my presence when I said hello and gave him a hug.  Unable to hold his head up, his chin rested on his chest, and even if his eyes opened slightly, he could only see me if I brought my face down to his chest to be in his purview.  Sometimes he would remain drifting after my greeting.  He was often restless, working at the corners of a blanket or pillow.  He seemed uncomfortable in his skin.  On those days, he received higher doses of pain and anxiety medication.   Upon receiving the medication, the fidgeting would subside and the worried wrinkle of his eyebrows and forehead would soften as he relaxed.  Often, he would drift into light sleep.

The day that I had arranged for the chaplain to come was completely different.  Dad was alert in a way I hadn’t seen in many months and chatty.  The words weren’t all easily forthcoming, but he was clearly talking about how to get where he was going. . . he thought he had it figured out. . . asked what everyone else was doing. . . asked if it was ok. . . said it was almost time… He was looking up with his eyes wide open and looking into my eyes.  I don’t think I’d seen the blues of his eyes since the summer!  I took his questions and his interest as an opportunity to give him permission to let go.  I answered all his questions and assured him that all of his work was done.  All of his children and grandchildren were happy and healthy. He had shown us all how to live with love, integrity, kindness and honesty. I had said all of these things before but on that day, I know that he heard me and understood. He was very receptive and aware. I encouraged him to trust the process and told him I would trust the process too. The chaplain arrived just as Dad and I were winding down a good 25 minute heart to heart that had included many fragments of deep conversation, tears, hugs and laughter.

Dad was attentive and alert during the readings and the laying on of hands and we all sat in silence for 5 minutes or more afterwards. I broke the silence by getting up for a tissue and Dad began asking more excited questions.  It was hard to follow since his words weren’t all coherent, but he did tell us about. . .all the people I will be seeing. . . I knew this time was coming. . . . she’ll be coming back for me, I know. . . A while later, as the chaplain and I readied to leave, Dad said “well, when I woke up today I knew I wanted to talk about all of this. . . Thank you. . . ”  Leaving Dad that day with hugs, chuckles, coherent words, eye contact and gratitude was so sweet and so hard.  It was as though he had come back in order to say goodbye.  I am so glad that I was there and ready to have that conversation with him.

The chaplain said it was the first time Dad had ever looked at him.  I assured him it was more engagement than I had seen in months.  I was grateful that the meeting to offer the Sacrament had coincided with such a surprising and lucid afternoon.  It felt like a real blessing, a moment of grace to lift our spirits and light the path.  I drove away from HC with a much lighter heart that afternoon and felt that Dad’s heart was lightened too.

The next day when I went to visit, Dad was in his wheelchair.  His hands were calm on his lap and he was awake and relaxed.  I said hello and gave him a kiss. He replied with “thank you, thank you”.  I told him that I couldn’t stay because I was on my way to the airport.  He replied with “thank you, thank you”.  I said “My pleasure.  You’re welcome.  Thank you.” The caregiver and I shared a glance and a smile.  As she walked me to the door, she said “he’s been like this all morning”.

It was very curious.  For weeks, he had been struggling with agitation, restlessness, and combativeness. Now, suddenly, he was at peace.  It was as if he could feel the opening in his body, the permission granted by our conversation, the forgiveness and promise granted by the Sacrament of the Sick. He was willing and ready to let go of the desperate trying to hold on.  Peace had found him — or maybe he had found peace.

It would be a month from that day before he died.  In that month, there would be plenty of ups and downs.  At the time I was not thinking of the future or the past, I was simply grateful for the deep breath of awareness and ease that we had been granted.

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Watchful Waiting

2012-2013

As his confusion made it harder and harder for him to navigate, Dad built a storehouse of anxiety, fear and insecurity.   By narrowing the walls of his world, he managed to get by.  He finally retired, but instead of flourishing into the time and space that created, he drew the curtains and brought his world even closer.

In retrospect, his coping was quite masterful.  It is only now that my brothers and I see how long he had been managing his shifting abilities without showing them to us.  We had attributed his increasing reluctance to travel as a choice not to visit.  We assumed he was playing less golf because his shoulder had gotten more stiff as arthritis settled into an old injury.  His diet became even more limited and he was always watching his weight.  He had never learned to cook, but his limited diet was becoming increasingly limited and he was losing too much weight.  In fact, all of these “choices” were adaptations to his changing abilities.

The weight of his burden was immense.  We watched the subtle changes.  We offered more and more support, but also continued to live our own lives.  When he stopped responding to emails, we returned to calling with updates to share our stories and engage him in our lives in any way possible. We mailed cards that, months later, I discovered that he would read over and over again – reliving our stories as new news each time. We wanted to believe that Dad was living his own life too.  Eventually it became clear, at some point he had stopped living and had begun surviving.

The details of daily life had become tedious.  Eating, dressing, shopping and walking were his only activities – and they were all-consuming.  What had at one point been the security of ritual and habit became obsessions, rightfully so.  Without the ability to learn new information or adopt new behavior, the only way to stay safe was for him to repeat previously adopted behavior.  His world was shifting – it was hard to pinpoint the source or the causes, but things were becoming hard.  He seemed only vaguely aware of it and only periodically annoyed by it.  My brothers and I patiently told him where to put away the dishes in his own house when we were with him and began to help with medical appointments and bills.  He lightheartedly told stories of putting clothes on backwards and going back to the grocery store 4 times in one day to buy soap because each time he got there he was not sure he wanted it.  He could not find slippers that were at his feet.  While he seemed aware that he was once able to make meaning of the led lights on a digital clock and knew that the device told the time, he was unable to translate.  He would point at the clock and ask, “what time is it?”  He would nod at my response, gracefully accepting that I had access to information that was no longer available to him.

My brothers and I began talking, wondering and worrying.  He was a grown man and should be allowed to live his life.  It wasn’t our place to tell him how he should live.  Surely this was not the life that he had envisioned for his retirement.  In his narrow world, there was not room for much activity or relationship.  He had a visit from one of us monthly, so he was alone most of the time.  Were we supposed to intervene?  We settled on “watchful waiting” – hoping that it would be clear if/when we should step up and step in.   It was.

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Welcoming the New Year with Faith, Hope and Love

It’s hard to know where to reflect on this year.  I can’t get past the last four months.  I have been in Maine since early November.  My Dad’s health had been declining rapidly and I wanted to spend as much time with him as possible while also supporting optimal care for his rapidly changing needs.

My brothers and I watched my Dad’s last breaths dwindle in intensity and frequency for several days until he died on December 17th.  In his last weeks, his life was like a fire that was no longer fed, slowly losing intensity and heat until the last fuel was exhausted and at last the flame extinguished.  His physical decline had taken several months, the final step after several years of mental decline from Alzheimer’s.  In the end, perhaps we should be grateful that it was slow enough to give us time to process, but not so prolonged as to extend the suffering of the decline from this disease.  But it wasn’t easy.  And it isn’t easy now as we face a future in which we will hold him strongly in our memories but will never again hold him in our arms for a hug.

Thomas’s mom died in September. She left the world quickly, suffering a heart attack on her way to physical therapy.  She was supposed to be recovering from a back injury, not dying. We were unprepared and shocked.  As we gathered with family to remember Susan, her life, and her death, we grew to appreciate life’s unpredictability and its offering. We all have a gift and we should not wait until tomorrow to offer it.  Tomorrow will always be uncertain, but we have today and we should live it well.
Ironically, that same lesson has been paramount in the last five years as I offered my Dad support, love and friendship even as his dementia isolated him more and more.  The past and the future no longer existed for my Dad but, until the last few weeks, he always had the present moment.  It was a gift for me to practice being truly in the present moment with him.  I learned to comment on the beauty of the beach without blathering on about a distant place or experience it evoked memories of.  I learned to turn my face to the sun and to encourage Dad to do the same and then to be quiet while we soaked in the sun’s warmth and companionship.  I learned that smiling or holding his hand could offer more comfort than my words.  Over these caregiving years, I gave a lot and I received a lot. I am truly grateful.  I am not sure where my energy and attention will be drawn next, but I am sure it will be informed by a new awareness and heightened appreciation for life, impermanence, frailty, honesty, integrity and trust.

Our family has had a year of many circumstantial changes too — graduation, new schools, new jobs, new sports, new homes. We have explored new foods, cultures and lifestyles and have more exploration ahead this winter and spring. But the year ahead will also bring another raft of changes that will require our family to lean back in on our resilience, openness, capacity to adapt, and willingness to rely on each other. We have a newfound appreciation for the quiet life of rural Maine as well as a newfound appreciation for the warmth and strength of our far-flung families.

And somehow, we are stronger, wiser, and more fully rooted on the ground and in our values in the wake of our loss and sadness.  Perhaps it can be explained by the reading from 1 Corinthians 13 that Dad shared when Thomas and I were married and that I read at his funeral service.  It ends with, “…these three remain faith, hope and love.  But the greatest of these is love.”

We will carry faith, hope and love into 2017 in both our hearts and hands … and we wish it for our family and friends too.