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.

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.

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.

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?

Signs of Spring

I went outside this morning prepared to meet the springtime weather that looms on the horizon this week. It was 15 degrees – an improvement for sure, and my weather app tells me it will warm to 45 before temperatures descend again this afternoon. In my eagerness to embrace the arrival of spring, I went outside without a winter hat, gloves and coat and was soon chilled to the core and reminded that my anticipation was not enough to keep the cold wind from biting at my skin.

I am reminded that my anticipation often precedes actual changes and adjustments . . . and the real warmth of spring will arrive in fits and starts. The changing of the seasons will only be dramatic after some significant changes have taken place. Those changes will arrive slowly – or two steps forward, one step backward. Not unlike the way that my children and father are changing.

T. found waking up unbearable this morning.   After finally tearing himself out of bed to get to the breakfast table, he nibbled a few bites then retreated again to the warmth and safety of his bed. Is it his body or his mind that is too exhausted to face a new day?

He has always been susceptible to the Monday morning blues – a reluctance to leave the autonomy and self-direction of the weekend for the external structures and constraints of school, but this is the third time in a month that he has missed the bus. Maybe the physical and emotional toll of being a pre-teen will weigh heavily on him. If each day will begin this way, we have a long decade ahead of us.

I find myself wondering what I could do to support him so that he will be better able to embrace, much less face, his life. He was in bed at a reasonable hour. He ate well yesterday.

But I know there are a myriad of changes and circumstances beyond my awareness and beyond my control. He is the only one dwelling within his body, living his experience. From the outside, I cannot know the hurdles that he faces. I can try to mitigate what I anticipate or imagine them to be. I encourage balance in athletic and sedentary endeavors, make sure he eats a multi-vitamin, support an early bedtime, etc. . . . but it will always be a guessing game. I am anticipating the spring – he is in a period of change. His awakening is coming, but I cannot anticipate what it’s arrival will look like. Like the seasons, I should anticipate that it will not arrive with consistent flow. It will come in fluctuations.

Dad’s cognitive changes are similar. They come in waves, periods of stability followed by periods of decline marked by changes in awareness and cognition. With each set of change comes a series of adaptations. After each set of changes and adaptations, there is a period of grace, where his circumstances meet his abilities and awareness in harmony. When anxiety was dominating his days and safety became a concern, the family gathered together and proposed a change on his behalf.

A year ago, we moved him from his condominium to an independent living apartment in a senior living community with graduated care on site when it became necessary. Within 5 months, he was on a care plan.   Within a year, we had moved him to a smaller apartment in the assisted living building where he would have more support and oversight.

If this is Dad’s spring season, it is the beginning of an opportunity to attend to the awakening of the moment. Without the distractions of anticipation or memory, he embraces each moment of each day. Being with him encourages me to be deeply present and aware, for each moment is unhinged from the rest of time. When the birds sing, we enjoy the birds. We don’t shed our coats in anticipation that the return of the birds will bring warm weather. We simply hear and appreciate the birds. In each moment, I am aware of the grace of letting go of past and future and embrace the depth of comfort provided by our companionship and time together.

If I can bring this sense of settling into each moment and settle into being together, perhaps I will be better support for the changes and needs that this changing season brings for T. We will embrace the distractions of the hormones in his maturing brain and body. We will cultivate awareness of social pressures, history and the fears of the future that are empowering rather than overwhelming.  Then we will let the past and the future fade and rest deeply into the day we have to live today.