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.

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.

Who Will I Be?

I know myself as the sum of many experiences, relationships and desires. I was born into a loving family and lived the self-indulgent life of a middle class childhood in a safe and loving environment.  As an adult, I have lived in the city and in the wilderness – gleaning understanding and hints of wisdom from the rhythms of each.  I have taken lessons in both staking claim to my territory and sharing my space from urban density and experienced the rewards and challenges of both self-reliance and community living in the wilderness.

I am currently raising a family and building a career in rural New England.  Everything I do is about attachment.  I am attentive to maintaining strong relationships with my pre-teen sons, deeply in love with my husband and interested in supporting him as his career flourishes.  I provide a backbone of support to great educators and administrators at work, consistently seeking ways to enable others to do their best work while also putting forth mine.

In my newest role, I am maintaining a web of communication between my siblings and aunt as we navigate the changes necessary to keep my Dad safe, healthy and happy as dementia alters his perceptions, connections and ability to function autonomously.   As past and future fade away in Dad’s world, he has become more and more of himself.  Unencumbered by past or future, my Dad is flourishing.  He is kind and caring, attentive to others, gentle and deliberate in every action.  He may not know you or me. He may not know that he travelled the world in childhood, worked tirelessly in adulthood and dreamed of a golden retirement.  He may not remember the joys and challenges of raising 4 children or know the value in the comfort of the stability he created.

But he knows each moment and gives to each moment his earnest goodness.

It makes me wonder, who would I be if dementia robbed me of my past and future.  My sense of self is so deeply intertwined with the people who bring meaning to my days.  When I am untethered from relationships, past experiences and future aspirations, what will be left of me?  Who will I be?