by Nancy Kidd

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Some time ago, I had a patient who was dying and was quite at peace with it. She told me she was grateful she had time to teach her husband how to make his oatmeal. As a hospice social worker, I have had the privilege of helping people do exactly that. Find peace and comfort at the end of life.

I’ve worked in and around the greater Merrimack Valley area and have been honored to sit with patients as they face this final human event. I’ve also been able to comfort families and provide a safe space for talking about their worries and concerns. However, to die in this country at the end of the last millennium and the beginning of this one is somewhat different than dying in other countries and cultures.

In some other cultures, death and grieving seem to be treated with more openness and grace. Families are encouraged to take extended and appropriate time to grieve. But here in our area, home of the clipper ships and the abolitionists, the hearty and the daring, the stoic and salt-sprayed, most of us don’t really want to talk about and explore what it is that happens to us when our life is coming to an end. It’s uncomfortable, awkward, and impolite.

Nothing can initiate a change in cocktail party conversation faster than when I mention that I’m a hospice social worker and that I help people find peace at the end of their lives. In the musical Hamilton, they sing: “We push away what we can never understand. We push away the unimaginable,” and yet it comes anyway. We do die though we tend to avoid or deny it. There will be an end date at the other end of that slash on all of our tombstones.

And when we do contemplate death, most of us hope to be at peace – we hope to die well with dignity and grace. We hope to die with nothing unsaid and tasks accomplished. If we do not die suddenly or unexpectedly, we may be granted the chance to consider exactly what that might mean.

E.L. Doctorow once said that “writing a novel is like driving a car at night. You can see only as far as your headlights, but you can make the whole trip that way. You don’t have to see where you are going or your destination, you just have to see two or three feet ahead of you.” Great advice for life as well.

Except…what happens when suddenly the end of the road is right in headlights? Suddenly our life is ending, everything we know about and have experienced will no longer exist, we have no idea what, if anything, comes next, and somehow, we are supposed okay with that?? Faced with this experience…that no one discusses…for the first and only time…with no rehearsal. What??

One patient said to me, “Nancy, just for a minute, think or imagine that there is no more Nancy Kidd in this world…try to imagine that.”

Quite often there exists a gap between the desired outcome of a “good death” and one’s ability to come to peace with this unimaginable event. Part of my work has been to help close that gap, to ease this journey, attending to practical wishes and also holding space for gratitude, forgiveness, and love. These last big three can be the most difficult to find and cultivate but efforts towards each can help pave the road to acceptance and beyond that…peace.

In my experience sitting with dying people, I’ve learned that to die well and at peace often means a few specific things:

To be as comfortable as possible, and preferably to die at home

To spend time with family and other important people in our lives

To spend some time talking with someone about our feelings and worries including what might be next And, last and very important, that we have as much control as possible.

This may mean a variety of things, but among the most crucial is that our wills and advanced directives are in place with no ambiguity or need for family members to scramble in our last few hours, or worse, be at odds with each other after we pass. This end-of-life consideration of wills and advanced directives, though practical and perhaps boring to some, may be the most important takeaway from my time this morning. So, those are the more practical pathways to what others many consider to be a good death.

Still others find they really want the chance to do something, to leave something behind before they pass. Take for example our oatmeal-instructing friend. She expressed gratitude for her ability to do just that. To pass along a part of herself to her husband. These gifts can be in the form of knowledge, objects, or words. But what it does is ensure that some part of us remains in the world. If I were to do that when I’m facing the end of life, there would still be a part of Nancy Kidd remaining in the world.

I had another patient who was grateful to be able to give special pieces of her jewelry to her granddaughters and let them know why she picked a specific item just for them. A gentleman I worked with explained that he was grateful he could share with his sons why he was giving them specific items – why one was getting his tools and chainsaw and the other son would get his art collection. Truth be told, he told me, neither was a great admirer of art, but only one wasn’t at risk of severing his own limbs.

Sometimes this legacy includes stories and memories shared with loved ones – precious anecdotes that will live on and be told to future generations. These gifts of themselves are the legacies that once they are given away inspire gratitude for its safe delivery and a knowledge that something of themselves will live on and remain in the world.

I had one woman whose wish was to go to Foxwoods one more time and she hired a driver and paid a nurse to accompany her to gamble for a day. As she told me, “The casino is my church.” I think she was a Unitarian!!

Some other patients, in talking about their feelings, realize that denial, anger, bargaining, depression, and acceptance are definitely not linear stages! One patient reported feeling all these emotions simultaneously in a period of about 10 minutes! Yet other patients felt they were not doing dying right if these stages did not arrive in consecutive order. Some found it difficult to find peace while reflecting on a life unfulfilled or incomplete. They often echoed each other in their assertion that they had not been “true to themselves” in their lives.

That fear of society’s expectations, financial insecurity, and lack of self-confidence had resulted in choices that did not resonate with who they really wanted to be and what they really wanted to do. At times, still others felt victim to the truism as expressed by John Lennon – that “life’s what happens while you’re busy making other plans.” As a result, some settled for what they would call a mediocre existence and never became who they were truly capable of becoming. Many were angry and bitter at end of life and wondered if this had an effect on becoming ill.

Fear of conflict, of failure, and lack of self-confidence had many reflecting on roads they never took and identities they never assumed. Some people expressed having a life full of worry and angst. One woman said to me, “I wish I knew then that most of what I worried and agonized about never happened!”

People talked about struggling with depression, anxiety, or trauma and never getting proper treatment for it. Others expressed regret as to “making mountains out of molehills” and taking life and themselves much too seriously. In spite of the variety of different wants, needs, actions, and tasks, a notable study tells us that there are five universal things that grant many dying patients peace.

1. I forgive you – a statement which may be to a long-lost friend or family member, but most often it is to themselves. That’s part of my work. To be there for them to express what they wished they had done and to forgive themselves for the ways in which they fell short of their hopes and dreams. A professor in grad school told me, “In order to heal you need to say your truth in a safe place with someone who will not judge you and just listen.” Some believe that prayer or speaking to their God alone provides healing, but one patient told me, “I need God with skin.”
2. Please forgive me – the need to express apology to those they have wronged but that life has not allowed for the brave kind of cathartic narrative that sometimes only comes when there are only a few days or hours left.
3. I love you – to know that they have loved and express that love to those important to them. These feelings which are the deepest and most profound are often too immense for the linguistic containers we are given to express them. We often package our love in actions: rides to school, always a bed to sleep in, birthday cards that arrive on time in the mail. But many don’t say those huge words “I love you” until the end for fear that the words will be too little or too much. Yet now, often as death draws near, love is finally fully and abundantly expressed.
4. Thank you – expressing gratitude in love received, in all the ways it had arrived.
5. Goodbye – to squeeze a hand or smile, to say “goodbye” or grant a look of grace and receive warmth and connection in return is often a final gesture of life. These are what patients often need to say or hear before some can find this desired peace at end of life. However, if there is one takeaway in addition to wills and advanced directives…of course, I know you will all take care of this in short order if you haven’t already.

There is another important piece of advice I heard consistently and urgently in these rooms. It may not be a shock to you to hear, but nonetheless, I am compelled to ask you to hear it as if for the first and only time. Time is the most important thing we have. While we have it let’s use it wisely. As Jack Kornfield translates from the teaching of Buddha in Buddha’s Little Instruction Book, “The trouble is, you think you have time.” I heard more than once: do it now!! Because you never know what life might hand you.

I sat with people who had just retired and then became sick and never had the time to take that trip they had planned all their lives. What I heard most often about time was recognizing how important it is to simply be with our children, family, and friends and enjoy the companionship and connection of love.

Know what I never heard?

I wish I spent more time at work.
I wish I had more things.
I wish I spent more time on my cell phone.

My patients would implore you to consider the following:

If you hate your job, quit, and find another one. Teach someone how to make something… oatmeal, a table, a life. Or how to tie a tie or how to untie a bound-up relationship. Tell them stories about people who shaped you.

Be open to the possibility that you really don’t know everything yet. That you can learn from the most unlikely of people and most unpleasant experiences. That the grooves you have worn into the pattern of your life may in fact block your ability to see the horizon.

Paint a portrait, take a dance lesson, learn to play a musical instrument. What is dormant within you that has always wanted to be explored?

Make eye contact with strangers on the street and smile. Risk the possibility of them thinking you strange.

Call your 4th grade teacher…or their child if they have passed. Tell them how they helped you.

Go fishing with your kids instead of working on that report. Put your cell phone down for heaven sakes!!

Look at the sky… and the trees. We live by the ocean… when was the last time you really looked at it?

Watch the sunrise. Watch the sunset while you spin along standing on this planet as it circles the sun.

As Elizabeth Kübler-Ross said, “It is only when we truly know and understand that we have a limited time on earth – and that we have no way of knowing then our time is up, we will then begin to live each day to the fullest, as if it was the only one we had.”

In closing, I offer as my blessing a portion of the poem “Blackwater Woods” by Mary Oliver:

To live in this world

you must be able
to do three things:
to love what is mortal;
to hold it

against your bones knowing
your own life depends on it;
and, when the time comes to let it
go, to let it go.