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

 

Reflections on “social hibernation”

As the world responds to the COVID-19 virus, as travel and group gatherings are discouraged and conferences are cancelled, Ted and I are hibernating. There could not be a better time for us to be called “closer to home”. We are so grateful that we were able to hold Geordie’s funeral at a time when people shared emotions and tears and hugs freely and without concern for spread of germs.

On the news we see photos of crowds in the stores, empty shelves, and hear of people trying to prepare at the last minute for who-knows-what. I hear on a quieter level, of people who have prepared in advance for earthquakes, power outages and other emergencies. And I think of parents who no matter how prepared they are, are facing huge changes with school, planned activities, caregiver arrangements and who do not know what changes might be announced in the coming day, while managing the chaos of kids. I also think of those who are less mobile, including the frail and elderly who may or may not have community to reach out to. And I think of those who are homeless (AKA vulnerably housed) who may at the best of times find it difficult to survive – especially on a cold windy day like today in Victoria.

We, as Canadians, have been asked to respond by self isolating and “social distancing.” To stay home and not go out to socialize, travel or do activities. I’m viewing this instead as “social hibernation” and that fits well for me, as the winter holidays often provide opportunities for snuggling in, reflecting, preparing and planning for a new year. Perhaps with this extended time in social hibernation, those “to-do” lists that never seem to get done, will find their way to the top of the pile. For Ted and I, our days and nights will include the work of grieving (i.e. lying on the couch and pondering).

My question for you….in a time of social hibernation, how can we connect with one another?

My immediate thoughts include long walks outside, meeting for a cuppa something via zoom or facebook or other group chats.
Tomorrow we are planning a group get together that will include the sharing of an inspiring quote – and see where the discussion goes from there.
We have decided not to drive to Alberta, and so we are also planning to meet online with a few of our kids to enjoy a cuppa hot chocolate together and share some memories or discussion that will center on Geordie and how we are all doing.

What are your ideas?

A personal note of reflection

NB: This is a personal note, shared in a professional space.

Thank you for the notes, emails, thoughts, calls and concern shared since we notified you of the death of our son last month.

I was concerned that some newsletter recipients might feel that it was too personal to share, but I am such a believer in the power of community. One nurse leader/educator wrote that she was inspired by our generosity in sharing with the learning community that we have nurtured. Thank you. I believe and have experienced that when we mourn with those who mourn and comfort those who stand in need of comfort, that we are all strengthened. I understand that the word “comfort” means, “with strength” or “great strength”. We have felt stronger in connection than we would in isolation. Thank you for sharing our burden.

Interesting, that same nurse educator commented on our commitment to optimizing end-of-life care. Over the years I have taught how “end-of-life care” can mean everything or nothing, where hospice and palliative care by definition include “care during bereavement.” Over the years I would say that we might first meet a family in the ER when their loved one has died, and the hospice or palliative care that we provide could be a link to bereavement services. Even in all the talk that I do about death, I did not contemplate that it would be us who would experience a sudden death, that it would be me who would need to be reminded of bereavement services. And it was a few weeks after Geordie died that I remembered,

Oh, VICTORIA HOSPICE – we should check out their services for the grandkids and for us!”

And, how incredible to phone, and make an appointment for myself, and an appointment for a grandson to see a dear colleague Allyson, a specialist with kids and grief. And in reaching out to Victoria Hospice, I also reached out to Virtual Hospice and their site for kids grief, and to Andrea Warnick and her podcasts and online support for kids and grief. If anyone is looking for a counsellor who provides online counselling, please let me know. And if you provide online bereavement counselling, please let me know and we will connect you.

For those who are interested in how we are doing, what we are thinking and feeling, please keep reading.

Ted would say that he feels at peace. Some of that peace comes from his belief in eternal life, in the feeling that Geordie is alright, and the hope that he will see him again. Some people express concern that he is “not grieving.” But he IS grieving. He is much more an instrumental griever, and is busy working in Geordie’s workshop, sorting his tools, repairing things that need repairing, building a tool kit for Geordie’s wife and one for the baby, and getting tools and boats and and… and… ready for sale. We were also thrilled to have some of Geordie’s bonus First Nation family join us for dinner last week, and basked in their presence and spirit.

As for me…. Well, I am much more a verbal processor…. And so… I have found healing in: good long walks with friends (one on one), the sharing of stories, experiences, beliefs, hopes, worries and frustrations, meals with loved ones, lying on the couch listening to segments of the recordings of the funeral and of the “Last Night on the Trail” (an evening of story and song), reading cards and emails that have arrived, and last night I wrote Geordie a nice long letter. Overall, I still feel very grateful that we had Geordie for 30 years. I am glad that he did not suffer. At times I am cross, irritated and mad that Geordie who cared for soooo many people was soooo careless with his own safety. I am confident that he learned well how to walk by faith, and love and serve openly and without judgement – perhaps the most important lessons in life. On a practical level, I wonder how things work in the world of spirits, and what he is up to now. I am open to your thoughts if you want to connect with me and share.

I just wrote a Facebook post about social hibernation – and would love to hear your thoughts. That will be added to the blogpost soon.

It is amazing to me to think of the “learning community” that we are blessed to be part of, across Canada, the US and Mexico. Ted and I thank you so much for your words, wishes, hopes and happiness. Please let me know what you do and do not want to hear about in this personal/professional space. I am happy to hear any feedback and advice, happy to have your questions and your comments.

Until next month,

Kath and Ted

Learning with ELNEC in Hawaii

At the memorial

At the War Veterans Memorial in Honolulu, with Jeannie White

A few weeks ago, Ted and I had the privilege to be invited to attend the ELNEC 20th Anniversary Summit in Hawaii.  ELNEC, the “End-of Life Nursing Education Consortium (ELNEC) was launched in 1999 to improve palliative care. In the past 20 years more than 24,000 nurses have attended one of the ELNEC Train-the-Trainer courses and have then taught more than 726,000 nurses and other healthcare providers worldwide.

Dr. Betty Ferrell has been the visionary leader of ELNEC while Pam Malloy has filled the immense role of Project Director. Pam is preparing to retire in January and she will be missed. I have cherished my connections with Pam and Betty over the years. They have shown great generosity of spirit to Life and Death Matters, have provided testimonials for our nursing texts and resources, and continue to support our work in Latin America.

I delighted to meet again with Polly Mazanec who is working with ELNEC undergraduate, Diane Parker. Diane is helping promote palliative care in Uganda as well as being a dynamic force inmoving pediatric palliative care ahead in her home state. And of course, it was wonderful to meet other faculty and participants from all over the states.

I attended the CORE-ELNEC course, witnessed the challenge of trying to share a large volume of material in a two day course. I was impressed with the binders that each participant received, including materials to teach other nurses.

I look forward to continuing to work with ELNEC, supporting their courses, and being supported in our work. Thank you #ELNEC. And best of best wishes to you, dear Pam, as you explore what retirement will be for you.

Photos below – I really enjoyed meeting up with these incredible people!

With Betty Ferrell, PhD, MA, CHPN, FPCN, FAAN

With Diane Parker

With Pam Malloy, MN, RN, FPCN, FAAN We’ll miss you!