Ask Your Loved Ones Now

Ask Your Loved Ones Now, by Barbara “shulamith” Clearbridge

In January of 2016, my father, at the great age of 99 3/4m was in a hospital on a respirator and it fell to me to be the deciding voice about his future.  Should we move him to a nursing home and continue to let the machine breathe for him for as long as he was able to live?  Or should we turn off the machine now and let nature take its course unimpeded?

Several times over the years the family had sat around the kitchen table to discuss what we wanted in various end-of-life scenarios.  My father was always very clear: “Do everything you can to save my life.  Don’t ever put me in a home.”  Over the past few years, each time he was sick, he said, “Don’t put me in a home.”

But we never knew to ask each other what choice we would make if all the choices were things he didn’t want.

Now he had congestive heart failure.  He was suffering.  He seemed confused sometimes.  He couldn’t speak anymore, couldn’t communicate by writing.  We had to guess what he wanted when he was agitated.  He’d been in bed on that machine for 10 days.  He couldn’t move his body any longer, he had gotten weak.  He was fidgety, so when no one was with him, they gently tied his hands so he couldn’t pull out his IV or dislodge the oxygen mask.  Seeing him with his hands tied broke my heart.  We made sure someone was nearly always with him.  He still laughed and gestured and enjoyed visits.  He still moved his arm to conduct us when we sang to him.

The doctor said he couldn’t keep my father in the hospital any longer because there were no more treatments to try.  The doctor told us kindly and clearly that my father would never walk again, so he would need either to live in a nursing home or if he stayed at home, he would need two caregivers 24 hours a day.  This we could not afford.

When I told my father about the only choices left to him, I think he understood but I wasn’t 100% sure.  He just looked sad and didn’t respond until I asked him if he wanted my mother to decide for him.  Then he nodded emphatically yes.

My mother, age 98, said, “I don’t want to murder my husband.”  The doctor helped us explain that it wasn’t the same as murder because he would have died already if it wasn’t for the respirator.  She understood but couldn’t decide what to do, so she asked my brother and me to decide.  My brother finally said, with tears, “Let’s let him go.”  If I disagreed, we wouldn’t do it and he would have to be moved to a nursing home.

So, my choice would decide my father’s future.  I thought that it would be a kind of torture for him to live long in his current weakness and confusion, both of which would certainly worsen.  What kind of life it is if your hands are tied to a bedrail?

So, I agreed to stop the machine.  We decided with compassion, with love, but it still felt devastatingly wrong to make this choice for another person.

A few weeks later, home again after his burial, I was still torn up about it.  I looked online to see what other people had to say after having done this.  I searched the End of Life Services library.  I found what I could at the Ilsley Library.  There was almost nothing written about this, but what there was, was unanimous: no mater what you decided, you would feel terrible about it.

So, ask your loved ones now, while they can still answer you: what do you want if every choice is a bad one?  Put their answers in writing so you have it.  Ask each other again from time to time over the years.

Cultures and Traditions at End of Life

by Rev. Matthew von Behrens, Chaplain at UVM/PMC 

  If you look in the phone book at last names in Addison County, you probably aren’t surprised to see many familiar French and English-sounding surnames. In fact, Addison County is one of the most Caucasian areas of the country – 92.4%!

 So it may surprise you that in my work as a chaplain, I routinely encounter people of all different races, cultures, and religions. While certainly not as prevalent as in other parts of the country, we are more diverse than it appears at face value. That particularly shows up in how families follow individual customs and rituals when it comes to the issue of death and dying.

Experiencing differences in how various cultures view the end of life can help us understand our own traditions better, as well as develop a greater appreciation and respect for others. Here are three traditions I have encountered in my work as a chaplain at the UVMHN’s Porter Hospital and Helen Porter Rehabilitation and Nursing and practices within them:

 In many of the traditions of the Hispanic / Latino culture, our largest minority group in the county, even very young children are included at the bedsides of the dying, as well as wakes and funerals. There is a general acceptance of death as a natural part of life and less of an attempt to “protect” children from this reality.

 “All Soul’s Day” or “La Dia de los Muertos,” November 2nd, is a very important holiday in the Mexican culture, from which come the majority of our Hispanic / Latino neighbors. The lives of the deceased are often commemorated and celebrated by building small altars at the gravesides of the deceased, containing offerings of food and beverages for the dead. There is a general mood of celebration in a day filled with parties, sweets and cookies and breads (often shaped like skeletons or skulls), and fondly recounting stories of the lives of those who have died.

 In Judaism, practices are different and emphasize giving plenty of room for grief and mourning. For instance, at the funeral service itself, flowers are rarely used and there is no viewing of the body. It is traditional for close family members to rend or make a small tear in their clothing as a sign of grief. At the graveside, most mourners are expected to put three shovels of soil into the graves. In Israel, caskets are rarely used (the body of the deceased is wrapped in a long, winding cloth) and in other parts of the world where caskets are used, they are expected to be unadorned, with no embellishment or even metal of any kind, including nails. For the body itself there are important rituals of washing and preparation, and generally there is the expectation that the body should be buried as soon as possible, even within 24 hours if practical. Burial is traditionally preferred over cremation.

 After the burial, a period of seven days of mourning (sitting shiva) is observed. Both before and after burial, the family is given plenty of latitude for mourning. For example, friends are encouraged to visit the house during those seven days, and although those in mourning always appreciate this, mourners are under no obligation to greet or even speak to them – the assumption being that they may be too grief-stricken to observe the usual pleasantries and niceties. In general, compared to a more stoic Yankee, New-England approach, there is a much greater allowance for visible signs of grief and mourning, and for a longer period of grief.

 Islamic practices also include rituals in regards to the washing and wrapping of the body in cloth and having a quick burial – so traditionally, bodies are not embalmed, coffins are generally not used, and burial is preferred over cremation.

 Islamic religious teachings discourage socially performative mourning such as loud wailing that existed in pre-Islamic Arabia, although some of these practices survive culturally today. Islamic teachings instead place great importance on community support for those who are mourning. Islamic leaders and community members use traditions of remembering life after death to imbibe spiritual renewal, hope, and support for those experiencing deep grief.

 This barely touches upon the wide diversity of the practices of different races, cultures, and religions when it comes to death and dying – let alone, allowing for the wide variety of practices within even one tradition itself. But it serves to give introduction to the idea that there are many ways to mark the transition from life to death and all can be considered a “normal” way to both mourn and celebrate the life of the deceased. Look for more such information in upcoming columns!

Dr. Diana Barnard; Excellence in End of Life Care

Local Physician Earns Award for Excellence in End-of-Life Care

Middlebury--Dr. Diana Barnard, a palliative care physician and long-time member of the Addison County medical community who works at both Porter Medical Center and the UVM Medical Center, has been awarded the UVM Health Network Home Health & Hospice Madison-Deane Award for Excellence in End-of-Life Care. This annual award is given by the Madison-Deane Education Fund, formerly the Madison-Deane Initiative (MDI), which is the educational arm of the UVM Health Network Home Health & Hospice’s Hospice and Palliative Care Program.

According to the MDI website, this award is given annually by the Madison-Deane Initiative to a Vermont individual, group or organization who “exemplifies the original mission and vision of MDI, thereby continuing the legacy of Drs. Madison and Deane and their original intent. Dr. Madison wanted to see physicians educated about pain assessment and control, and Dr. Deane wanted to see education about advance directives and hospice and palliative care, so as to prevent unnecessary suffering for patients at the end of life.”

“We are so pleased to learn of this well-deserved award, and deeply grateful to Dr. Barnard for the specialized and invaluable work she does here at Porter to provide palliative and end-of-life services to the people of our community,” said UVMHN Porter Medical Center President Seleem Choudhury. “Diana exemplifies our mission of caring for our community, one person at a time.”

The mission of the Madison-Deane Education Fund (MDEF) is to improve end-of-life care through inspiration, education and collaboration in the following ways: “Be a catalyst for the acceptance of death as a natural part of life. Be a leader for education, information and resources relevant to end-of-life issues. Support those who create and encourage dialogue about how individuals and families face life-threatening illness.”

Spinning Together; A Volunteer Story

Spinning Together; A Volunteer Story

Last Thursday, I took her to the Twist of Wool Spinning Guild for the last time. Then this week I informed them that she was at the Respite House, every person was surprised and said how well she seemed at Guild. Not one person realized how sick she was.

That is so like "B". She forged ahead, didn't spend time complaining about how she felt, and did the things she loved that she could. And then when she had no more "push" in her, she let go.

I will really miss our Tuesday visits. We would set up our spinning wheels in her living room and spin for a solid hour. "B" would suck down those Diet Cokes and we would talk and laugh. (Okay, I admit, I had one or two DC's in my year there and I enjoyed them)!

Every first Thursday of the month, we would load the spinning wheels and her O2 tanks, sometimes a wheel chair, into the car and drive to Middlebury for Twist of Wool Guild meetings. We were quite a sight coming through the door!

She loved going to Guild, and she was, I think, very pleased with herself that it was she who got me re-involved with them. You see, I was a member of the Guild when my husband was alive in the early 2000's. But after he died, in 2006, I stopped spinning and knitting altogether. It just made me too sad.
So when I met "B", and she told me that she loved to spin and go to Guild, I knew that I had to make that step and reconnect.

It seems perfect that it was my hospice patient who brought me back into that world. I will probably set aside time every Tuesday now to spin, and I am definitely re-joining the Guild.

Thanks for taking the time to hear my little story.

Singing Over; A Wellspring Poem


a Wellspring poem by Jack Mayer

He nears the end of this journey,

preparing for the next,

breathing coarse, intermittent,

body tranquil but for fitful breath.

We stand in a semi-circle and sing a hymn,

cocoon a man we know because he is one of us,

and do not know because he approaches the boundary.

Small voices in four-part harmony

fill the dying room, majestic as a choir

suffusing renaissance heights.

I know my part well enough

to be present to the mystery,

to see myself in his place,

to give comfort and receive comfort at the same time.

To attend at the time of dying,

and sing,

is grace made visible,