A reflection by Maureen Russell

Today I met with a wonderful group of Health Care Assistant students from Capilano University. In preparation for the time together they sent me a list of questions, and I in turn considered the questions and what I might share. I shared with them a reflection written by Maureen Russell, a psychosocial care provider who lives and works in southern Ontario.
This reflection was inspired by a man whose experience with a Personal Support Worker helped him to trust, to open up, and prepared him to eventually be able to meet with Maureen in the last weeks of his life. Maureen was adamant, that without the work of the PSW the man never would have been able to open up with her and address some of the deeper issues that he carried.

Reflection—Undressed 

You entered, and my heart sank. Today would be the first day I would allow a stranger to bathe my broken body. 

How could I have come to this…this moment of unwanted dependency? 

I cringe with despair. A tear dares to sneak its way from beneath the mask of courage I so sheepishly hide behind. 

Who are you, Stranger? Who are you they send to enter my intimate space? 

Do you know ME? Do you know who I am? 

How do I let go into your hands, that which has only been felt by the gentleness of my mother’s touch oh so long ago? 

I shudder as you draw near. My decrepit body tenses and my stomach churns. I close my eyes and turn away, anticipating your cold and callous touch. 

I wait…I wait… 

Till broken is the air by your slow and soft voice…“This must be difficult for you. How can we best do this together?” 

How     can       we       best     do        this            together?  you asked…. 

Breath releases, body relaxes and my facade of courage slips.  Tears flow. I let go. And the waltz begins… 

In the weeks and months to come, we danced every day as you cleaned and cared for my declining body with the utmost respect and compassion. 

Within this place of “the intimate” that I so desperately feared had morphed a space of trust. I felt safe to wonder aloud with you…“How will I die?” “Have I mattered?” “How will I be remembered?” “What is the purpose of it all?”  

You quietly listened without judgement or a need to fix…For that, I thank you.  

And then, you offered me another partner, a counsellor, who could take these new steps and dance the dance of purpose and meaning with me. And because of you, I could accept her help.

I could let go of my masks and facades and bare my true self on my last waltz. 

Little did I know when you entered that being undressed would allow me to be naked.  

Deep gratitude to YOU who cared for my body and gave space for my spirit.   

Contributed by Maureen Russell 

Thank you Maureen for sharing this wonderful reflection with us!

Palliative Care – a Human Right – so apparent during COVID

Deaths from COVID-19 are approaching 3 million world-wide. Much of the discussion about ethical issues has centered around the availability of ventilators, but little has been said about the need and the responsibility to provide palliative care, ways to integrate a palliative approach for those who are seriously ill, and how to best support those who may or many not get (or want) a ventilator.

In Ontario palliative care specialists helped and provided care in the long term care facilities hardest hit by COVID. But specialist cannot do this in isolation.

In the Journal American Medical Association, article titled, “Integration of Palliative Care into All Serious Illness Care as a Human Right” Rosa, Ferrell and Mason wrote:

“COVID-19 has highlighted that every clinician needs knowledge and skills in the fundamentals of palliative care.“

Palliative care is not dependent on life-saving interventions. It may very well include a ventilator, but it is ultimately structured around the individualized wants and needs of the patient. It includes alleviating suffering and managing complex communications, psychosocial dynamics, fluctuating symptom management needs, and spiritual care throughout the dying process.

Every patient treated with a ventilator also needs palliative care. It is not an either-or clinical proposition, but rather a both-and moral imperative.

COVID-19 has accentuated the need for clinicians to have frequent conversations with patients and families about dying. The pandemic has forced many healthy people to confront rapid-onset, life-threatening trajectories of acute illness. Patients are dying without their loved ones, and families are grieving alone. For every person who dies, an average of 9 others are profoundly affected and grieve.2 COVID-19 has interrupted the cultural and community practices for coping with death, raising concerns about the pervasiveness of grief and loss associated with the pandemic…. 

Access to palliative care is a human right. Our inability to deliver it in the setting of COVID-19 and other serious illnesses is a human rights violation. Education… is needed now.

Personal Support Workers and nurses (both in field and in training), like all health care providers, need the tools and foundation to know how to support individuals living and dying with COVID-19 or living and dying with any life-limiting illness. Now.

And a time to cry….

 

I wrote this reflection on Jan 31 ,2020, a year and a week after our son Geordie died,

At this one year mark, I #GIVETHANKS for family, friends and colleagues who supported and encouraged us, buoyed us up, laughed and cried with us, mourned with us, and comforted us. They are all excellent examples of #CompassionateCommunities and of #Griefliteracy. 

As I look back on this year, I consider that this year was a time to cry ( #TIMETOCRY ) – this was a year of sorrow. I allowed myself to feel it, embrace it, go with the flow – go with the flood of tears. This first year was my time to cry. There were times when I did not cry, and there were times when tears came frequently and in abundance. And there were times when I laughed and cried at the same time.

I like the idea that tears wash out toxic waste – that must make me pretty clean!!

The metaphor of helping large physical wounds to heal can help us understand ways to support a person to heal following loss.

The healing of large open wounds (for example pressure sores caused by lying in one position for too long) can be facilitated by:

  • allowing the open wound to heal from the base up (vs trying to suture the edges together as one would with an incision),
  • permitting the serous fluids produced at the site to moisten the wound bed,
  • providing the person with good nutrition, and
  • positioning the person to avoid direct pressure on or near the wound.

Grief is a whole person, natural process by which a person adapts to life without the person/object that has been lost.  Grief is the healing process. Like wounds, grief may be supported by:

  • allowing the wound caused by the loss to remain open, to not try to cover it up, suture it up, and fix it quickly. In other words, allowing the wound to heal from the inside out.
  • allowing sorrow to be felt and experienced and allowing tears to flow. Perhaps tears also provide nourishment to our soul.
  • providing good nutrition – providing healthy food, casseroles, salad, nourishing drinks support the griever to do the work of grieving,
  • permitting, encouraging time away, away from work, away from major stresses (compassionate leave) and decreases pressure on the whole person supporting healing.

Being open to the sorrow, permitting tears to flow, striving to eat (or provide) healthy foods, have all helped this year in healing my wounds, in grieving my loss.

Moving into year two

And now… As I move into year two from Geordie’s death…On a head level I am hoping that I will cry less and feel less sorrow in the coming months. (A counsellor smiled when I said this and suggested to me that that might not be possible. That I may not have control over that sorrow :)) But, I would like to give it a try. (Perhaps you, like the counsellor are thinking, “Well good luck with that Kath! You do not get to choose!”)

In scriptures there are references to learning that happens “in your heart and in your mind.” I sometimes joke that “my head got the memo that Geordie is just fine in this place of life after death but my heart did not yet receive the memo – hence the tears”. So, perhaps this year, I will see about helping my heart get the memo.

My plan of the moment is this: When I am talking or reflecting and find myself starting to cry, then I will ask myself if this conversation or this reflection is helpful and if I want to “go there”. I will ask myself if I want to cry or if another road might work better for me in that moment. If I want to take a different road, I will breathe deep, change my tone, speak from my head and not my heart, and continue with that conversation…. OR …. I will suggest that we change the topic or change the reflection.

One week into this plan I am finding that asking myself these questions is giving me options, and allow me an escape from the ongoing sorrow.

In defense of tears…. I need to be very clear…

It is not that I think that crying is bad, or that tears are bad! Not at all!! As I mentioned above, tears can help provide moisture and nourishment. And I am queen of crying! It is just that crying can feel soooo exhausting. And sorrow is so sad…. and for a while I would like to try something else. Geordie was all about living fully, and facing life head on. So, in the coming weeks/months I will just remember that I may have a choice to cry or not to cry, to talk or not to talk, to reflect or not to reflect…. and can chose what would be the best for me at that time.

I #GIVETHANKS for friends and family who have permitted me to cry as much as I like over this past year and they encourage me to continue to cry as long as I need/want to.

I #GIVETHANKS for those who have expressed appreciation for my sharing of my grief and have allowed me to be open in my grief. 

This posting today, is one step in this journey. And tomorrow I may be writing again about the benefits of tears, and a year from now I may write that my second year after Geordie’s death was just as sad as my first….and you my friends and colleagues will get to witness that grief has it’s own timeline…

All the best to each of you in grieving, learning, loving and living. May you be supported in #compassionatecommunities. #griefliteracy.

Hugs from a virtual distance – with hopes for more hugs in person by the end of 2021!

Kath

 

 

COVID-19 – living with and facing death

The COVID-19 virus is coming to a home nearby. How near? And how serious? Even if the curve is flattened, the reality is that people will get sick, and people will die. The deaths could include me. That is a reality.

This morning my dear colleague Elizabeth Dougherty shared an EXCELLENT article, This Pandemic is Personal, by Dr Ira Byock. Ira writes that he has graduated into a high-risk group of “elderly people”. He writes that 1 in 5 of elderly people who become infected do not survive. When I checked last, I was 23 and Ted was 29, but we sneezed a few times, turned around, had a wonderful family and some great adventures, and voila, Ted is joining that group of “over 70” in the next few years and I am just a bit behind him.

I may not be able to control if I die, but I can control what I do to prepare. 

When I teach, we sometimes discuss the pros and cons of a sudden death vs a steady more predictable decline, a stuttering up and down decline, and a long slow lengthy decline. There is usually a group of people who like the idea of a sudden death. Then the discussion follows that sudden death is difficult for family.

On January 23, 2020, our 30 year old son, Geordie Murray, died a sudden accidental death. I know only too intimately the things that I wish we had done, could have done, would have done, had we known in advance that he was going to die. I know only too well that there are things that Ted and I can do now to decrease the burden on our loved ones, and increase their likelihood of healthy grieving, if we do die “suddenly”.

This time of social hibernation provides us with opportunities to prepare. And looking in the face of death may enrich our living.

This afternoon, inspired by Ira Byock’s article, Ted and I will sit at the table and review our will, organize our papers, share our passwords. We will talk about how we can best connect with family and friends. Then we will go for a walk on our country road and discuss ways to stay healthy.

Please read the following article by Dr Ira Byock and then return and comment below on this blog. We need to talk about this.

With warmth, a great big virtual hug,

Kath

Original article by Dr Ira Byock available here

I could certainly be one of the many tens of thousands of Americans who will die in the next few months…. mainly because I’ve graduated into a high-risk group.

While all adults are at some risk, Covid-19 is far more lethal to elderly people. I’m 69 and my wife is 73. At our ages, upwards of one in five people who become infected do not survive. … Given the anticipated shortage of mechanical ventilators – we’ll need between three to 10 times the number available – and the fact that older patients who require mechanical ventilation usually go on to die, triage guidelines will likely not offer advanced life support to people my age.

…Life is a precious gift, but a fleeting one. We live each moment, but just a heartbeat away from eternity…. I go about my days, filled with meetings – now all by video conference – calmly aware that this could be the last month of my life….

My path forward is clear. In the days ahead, I’ll express my love in preparations. As a doctor, I know well what those will entail. I teach this stuff frequently….I can tell you a lot about what happens in real (this) life after we die, and how we can affect what happens.

I explained that since we’re inextricably connected to others, playwright Robert Anderson’s observation applies, “Death ends a life, but it does not end a relationship.” After you die, the people who love you will grieve. They will miss you and go through a range of emotions when they think of you; which they will do often. They may have regrets or satisfactions or both. Thought of in this light, yes, there’s a lot we can do to affect how people live in the wake of our deaths and how we remain in their lives. 

It’s now time to take those lessons seriously. My wife and I will finally complete our “in case of death” file box. We model ours on the one that my mother left for my sister and me. The day after she died suddenly, we found it sitting next to the telephone in the kitchen of her retirement condo. Ours will include our will, the title for our cars, the deed for our house (not copies, the actual documents), our bank account numbers, passwords for financial and social media accounts, along with instructions about what to do with our bodies and how to access the money we’ve set aside to do so.

Our family has started having Byock Family Visit Zoom calls so that we can visit and grow together through this period of social isolation.

I’m also using my confinement to reach out to people I care about but haven’t had a conversation with in years. Mostly it’s to let them know I value our relationship and to reminisce, but also to leave nothing important unsaid. Since no relationship is perfect, it’s a chance for me ask for forgiveness for past mistakes and transgressions. It’s an opportunity to let others know that I forgive them – any misdeeds and hurt feelings are water under the bridge – and to say thank you and I love you.

Buddhist meditation teachers and seriously ill patients have both taught me that in facing death, we can begin to live fully. I’m going to do everything I can to stay safe and survive this pandemic. If I die, I want the people who matter most to me to know how I really feel. To every extent possible, I intend to joyfully celebrate life and the people I love in the very face of death.

Ira Byock, MD, is chief medical officer of the Institute for Human Caring of Providence health system. His books include Dying Well and The Best Care Possible.

— Published on March 19, 2020