Saturday, March 21, 2020

Caring Through COVID-19 ...





You Deserve Love.

Anonymous




Hello Everyone,

COVID-19 has turned life upside down for all of us including, and perhaps especially, family caregivers and helping professionals. While these two groups already have PhD's in caring for others through times of uncertainty, even their cache of coping strategies can feel strained by today's circumstances.

As many of the things modern humans count upon to be solid and unassailable disappear, helpers, like everyone else, can become anxious and frightened and lost and confused. The earth shifts beneath our feet. We grasp for something solid to hold on to but can't seem to find it. Little makes sense. In our shock, we lose our bearings. Everything is affected.

An early response to this kind of crisis is to reach out for control, to try to make the uncertain certain again. As we slowly realize that we're living a new reality and can't return to "normal", we begin to search for ways to cope. Depending upon our histories and personalities, some of us withdraw and others reach out. Some hoard toilet paper and others pray. Some tell stories of light in the darkness and others share rumours and tales of doom.

Fortunately for me, I made two small discoveries this week that offered a positive pathway for coping. This path is one with which you're all familiar - the path of caring - and the two things that reminded me to care were an anonymous message and a poem. Let me share them with you.

I noticed the anonymous message during a solitary early morning walk through the deep ravine behind my home. The clear sky had brightened though the sun's rays had not yet crossed the edge of the ravine. As I walked down the steep trail through dark evergreens and early spring growth, I came to a wooden bridge crossing a rushing stream. Halfway across the bridge, I noticed, on my left, a torn piece of paper, damp with dew, anchored to the railing by a small rock. On it, someone had written in pencil the words, "You Deserve Love." You Deserve Love - a simple reminder of how important it is to treat ourselves with love and care through difficult times like these.  I'll never know who scrawled this message on a torn bit of paper and left it on a wooden railing for all who passed by but I'm grateful that they took the time, and cared enough, to do it.

The second reminder to care came in the form of a poem written by a Father Hendrick, OFM, whose personal details are also unknown to me. I tripped over his writing in an article by a West Vancouver priest who had returned from doing volunteer work in Assisi, Italy just before the borders closed. The poem goes like this:


Lockdown

Yes there is fear.
Yes there is isolation.
Yes there is panic buying.
Yes there is sickness.
Yes there is even death.
But,
They say that in Wuhan after so many years of noise
you can hear the birds again.
They say that after just a few weeks of quiet
the sky is no longer thick with fumes
but blue and grey and clear.
They say that in the streets of Assisi
people are singing to each other
across the empty squares,
keeping their windows open
so that those who are alone
may hear the sounds of family around them.
They say that a hotel in the West of Ireland
is offering free meals and delivery to the housebound.
Today a young woman I know
is busy spreading fliers with her number
through the neighbourhood
so that the elders may have someone to call on.
Today Churches, Synagogues, Mosques and Temples
are preparing to welcome and shelter the homeless, 
the sick, the weary.
All over the world people are slowing down and reflecting.
All over the world people are looking at their neighbours 
in a new way.
All over the world people are waking up to a new reality. 
To how big we really are.
To how little control we really have.
To what really matters.
To Love.
So we pray and we remember that
Yes there is fear.
But there does not have to be hate.
Yes there is isolation.
But there does not have to be loneliness.
Yes there is panic buying.
But there does not have to be meanness.
Yes there is sickness.
But there does not have to be disease of the soul.
Yes there is even death.
But there can always be a rebirth of love.
Wake to the choices you make as to how to live now.
Today, breathe.
Listen, behind the factory noises of your panic.
The birds are singing again,
The sky is clearing,
Spring is coming,
And we are always encompassed by Love.
Open the windows of your soul
And, though you may not be able
to touch the empty square,
Sing.

Father Hendrick, OFM


So, two synchronistic reminders to care well for ourselves and to notice and care well for others. Could there be a better wisdom path in these days of uncertainty?

And as we practice caring for ourselves and others, let's also remember to extend our deepest regard and appreciation to all who sustain our caring in these difficult times - family, friends, colleagues, inspirational writers, spiritual teachers, poets, artists and, especially, the physical, mental and spiritual care providers who put themselves at risk every day to keep us well. Equally, let's remember to follow ALL the current public health directives so we're here to care for the years to come.

Keep well, everyone, and please do your best to nourish yourself and others so we can all keep on caring ...






Wednesday, January 29, 2020

A New Workshop: Chronic Sorrow: The Recurring Grief of Family Caregivers ...





Sometimes you just need a good cry in the shower.

Anonymous






Hi Everyone!

I'm excited to announce the launch of a new Caregiver Wellness Community Workshop -  Chronic Sorrow: The Recurring Grief of Family Caregivers.  It will be held on Saturday May 30th  from 9-4pm (registration at 8:30) at the Granville Island Hotel in Vancouver, BC. The tuition is $210 (includes handouts, continental breakfast, light lunch, breaks and GST).  Brochures with registration forms are available at caregiverwellness@shaw.ca.

Family caregivers grieve many losses and they tend to grieve alone - in the shower, in the car, in the laundry room, on solitary walks. You grieve because your loved one's serious, permanent illness or injury has changed everything. And with each change comes loss and with each loss comes grief.

Studies, so far, suggest that up to 80% of family caregivers experience recurring episodes of variably intense grief continuing from the time of their loved one's diagnosis until that loved one's death. This grief does not necessarily diminish over time like grief after death. Rather, it can increase in intensity and frequency as time goes on. This caregiver grief is called Chronic Sorrow.  (Chronic Sorrow is also experienced by people who have a serious permanent medical condition, but in a slightly different way.)

Chronic Sorrow is a normal response to loss without a foreseeable end. It is not depression or complicated grief though it is sometimes misdiagnosed as such. It includes not only feelings of sadness but all the emotions of grief - anger, guilt, envy, anxiety, fear, loneliness and others. These grief emotions are triggered whenever something reminds you of the discrepancy between how things are and how they "could" or "should" have been had the illness or injury not occurred.

Chronic Sorrow  cannot be "cured" but you can learn to live with it more comfortably and that's what this workshop is all about. It had a "test run" with the family caregivers at the Children's Organ Transplant Society and the Starlight Foundation last spring to very positive reviews and now it's here for you - anyone who provides physical or emotional support to a person with a serious, permanent medical condition, physical or mental.

Space is limited so please register early to avoid disappointment. The registration deadline is May 15th.  

If you have questions, you can contact Jan at caregiverwellness@shaw.ca or (604) 297 0609.

Hope to see you there!



*** I'm sad and disappointed to say that all Caregiver Wellness workshops are postponed until at least the fall due to COVID-19. ***




Wednesday, January 1, 2020

Re-dedication ...


It's never too late to be who you 
might have been.


George Eliott





Happy New Year, Everyone!

Today, the beginning of a new year and a new decade, is an opportunity to re-dedicate ourselves to the things that matter most to us.  In this threshold space, we can take a moment to remember - or reprioritize - the core values by which we want to live our lives.  And, having done that, we can set an intention to act in accordance with these values throughout the New Year.

Caregiving can greatly limit your ability to pursue the external goals you've set for your life, to live the life you were "meant to live". In fact, this can be one of the major losses underlying a family caregiver's Chronic Sorrow. However,  the inability to pursue external goals needn't keep you from re-dedicating yourself to inner goals. Do you ever wish you could be kinder, more compassionate with yourself and others, more honest, calmer, more loyal, more open-minded, more balanced, more trusting, more trust-worthy, more patient, more empathic, more courageous, more consistent, more loving ..? The list of possibilities goes on and on, depending upon the things you hold most dear.

Why not take a moment, now, to recall all the values by which you would like to live. Then look at your list and choose the top one or two you would most like to guide your life in the coming year.

Once you have chosen these core values, allow yourself time to consider how they would look, acted out in your day-to-day life. What, exactly, do you want to re-dedicate yourself to doing or being? What baby steps might you want to take toward strengthening the expression of these values in your life?  The answers to these questions will become your intentions for the New Year.

We know that rituals can help to solidify, strengthen and sustain our intentions, so you might like to go on to create a simple ritual to formalize your re-dedication to living by your values. One such ritual might be to:
1.  Find a quiet space
2.  Light a candle
3.  Notice the pattern of your breathing for a few minutes and then imagine your chosen values filling and strengthening you on the in-breath and pouring out into the world on the out-breath
4. After you've been sitting with your breath and values for sufficient time, make a positive verbal and written re-dedication of your intentions for this new year. Keep the paper close at hand in the days ahead as a reminder to act congruently with your values.

And as a way of following through with your New Year's re-dedication, you might also begin to  briefly ask yourself the following questions at the end of the day:

1.  Where were my actions in line with my values today?  Where were they not?
2.  Where they were not, how might I adjust things tomorrow?
3.  What more can I do, in baby steps,  to bring (your chosen values) more fully into the world?

(Now, being a human being, don't expect yourself to be able to  act according to your values 100% of the time. When you  mess up, just gently forgive yourself, apologize where necessary and then begin again.)

Just thinking through a conscious process of re-dedication like this will help you to live a more authentic life in 2020 and to notice more quickly when compassion fatigue, burnout, accumulated grief or moral distress are drawing you away from what matters most to you.

A very Happy 2020 to each of you!


Tuesday, December 24, 2019

Feed Your Spirit ...






Self care is not selfish.

Anonymous






Hello, Everyone,

Whether you are a family carepartner wondering how on earth to manage the holidays on top of your regular care-giving duties or a helping professional working 12 hour shifts over the holidays, self care deserves a place right at the top of your to-do list.

Genuine self care springs from a place of self compassion and self compassion means simply giving the same kindness to yourself that you would give to others in a similar situation. Self care is not selfish. It means allowing yourself time to heal, refresh and renew so you can become or remain whole and healthy. Once your depleted self is refilled, you can then give to others with more fullness and joy. (Those who have attended the Caring On Empty workshop will remember the wisdom of one of my favourite Sufi sayings - Never give from the depths of your well, only from the overflow. This requires that you actually have an overflow from which to give!)

Most of us can quickly come up with physical and emotional ideas for staying strong and healthy during the hectic holiday season - eating well, taking pauses to rest, frequent hand-washing, getting back to the essence of the holidays, booking a good therapy appointment - but how many of us take time to consider what we might need to feed our spirits during these busy and poignant days? Below are a few ideas to consider as you add a spiritual dimension to your holiday self care plan:

1.  Simplify.  For many, holiday traditions have become increasingly complex, commercial and just a little crazy. If this observation applies to you, consider choosing  the top four values by which you would like to live your holidays and then assess your usual traditions to see if there is an alignment between your values and activities. If not, consider what changes you could make to have a simpler, more authentic celebration. 
This week, someone told me the story of her sister who had moved into a new home right before Christmas. She quickly realized that her new neighbours were folks who went all-out in decorating their home and property. Rather than trying to compete and add more stress to her life, she made a sign, decorated it with lights and wrote on it a large arrow pointing to the neighbours' house and added the word,"ditto"! One of her values was to simplify her holiday customs and, in this one public act, her values and actions were aligned.
2.  Stay centred.  Spend a little time alone. (This is especially important for introverts, those who refresh and refuel through spending time in their inner world.) Use contemplative practices that are familiar and work for you - meditation, centering prayer, reading poetry, connecting with Nature, receptive photography, journalling and others. Reflect upon the meaning of the season and how it may have changed in your life over time. Be receptive to new insights. Pace yourself so you have time to process your feelings. 
3.  Use the Enneagram. Use the Enneagram to help you understand, forgive and accept yourself and others when people push your buttons at holiday gatherings. Recognizing the motivations behind the behaviour of those who irritate you can make Christmas dinners a little easier to take.
4.  Practice gratitude. The last Christmas before my husband died, he gave me one of Sara Brethnacht's Gratitude Journals and wrote on the first page, "Let's try this. I think it will help." And help it did. It didn't take away the pain of our long goodbye or the grief of our leave-taking but, in some magical way, it helped to balance the suffering. Each night we would write down 5 things for which we were grateful and then read them to each other. Later, when he no longer had the strength to hold a pen, we would lie in bed in the dark and whisper our gratefulness to each other. 
For those of you caring for loved ones this season, an intentional gratitude practice could help to balance your pain as well. If you have trouble thinking of something for which to be grateful, try looking at Bro David Steindl-Rast's latest gratefulness video for some prompts. (You will have to listen carefully in a quiet place because the speech of age now complicates Bro David's thick Austrian accent, but it's worth the effort to listen.)
5.  Be inspired. To inspire is to breathe life into something or someone. The word comes from the same Latin root as that for spirit.  We are all inspired by different things - acts of kindness, acts of courage, beautiful poetry, the wonders of nature, great works of art. Choose to spend time with the things that inspire you this season and take the time to savour them, allowing them to sink into your body, healing and energizing your life.

These are just a few ideas for feeding your spirit during the winter holidays. I'm sure you have your own as well. The question is, will you allow yourself to make space to use them ... ? I hope you do.

As I pack to leave for Vancouver Island for my own holiday festivities, I wish each one of you exactly what you need to feed your spirit this Christmas and every blessing in 2020.

Jan


   

Thursday, November 28, 2019

Essential Service ...





When one is sick, two need help.

The Well Spouse Association





Hi Everyone,

It's been a stressful few days here in Vancouver. A labour dispute between transit workers and Coast Mountain Bus Company left many scrambling as they faced the possibility of a three day transit interruption. Amongst those most stressed but least acknowledged were family caregivers/carepartners and their care recipients - young, old and in-between.

Many family caregivers depend upon the support of homecare nurses and care aides to provide assistance in moving, bathing and feeding their loved ones plus the provision of medicines and treatments. They also need professional respite support so they can go to work, run errands, buy groceries and prescriptions, attend medical and treatment appointments and tend to self-care. When  professional helpers are unable to take transit to work or between clients, as 40 - 50% of them usually do, the stress on families they serve rises exponentially. (As if it were not high enough already.)

In looking through the online, television and newspaper articles about this incipient crisis, there were many more articles about the impact of the strike upon students and their final exams than about the needs of our most vulnerable. It makes one wonder just how cognizant the decision-makers were (on both sides of the table) regarding the risk they were imposing upon populations already at risk.

(And that is to say nothing of people with serious medical conditions who do not have family caregivers and depend entirely upon care provided by community health agencies, or who simply care for themselves. I have a friend who, while receiving treatment for breast cancer, travelled to and from her chemo appointments by bus because taxi fares were too expensive and she didn't own a car. How would she have managed during a three-day transit strike ...?)

It seems to me that people like these - family caregivers and those managing their own illness or disability - deserve to have basic transit declared an essential service so they are not subjected to additional strain and risk. We are constantly telling family carepartners and those with chronic conditions to take better care of themselves but, as a society, we owe it to them to at least make that possible. Caring for the caregivers and those with serious health conditions is the responsibility of us all.




Thursday, September 12, 2019

Enduring Somatic Threat ...



Once you ... put the pieces back together, 
even though you may look intact, 
you (are) never quite the same
as you were before ...

Jodi Picoult


Hello, Everyone,

Over the summer as I was writing an article on Chronic Sorrow, I tripped over some interesting new medical research on a proposed subset of posttraumatic stress called enduring somatic threat (EST). Have you heard of it? Well, to be honest, neither had I -  though in retrospect I recognize aspects of it in my husband's seven year journey with heart failure.

Physicians and psychologists in the cardiovascular field have been studying the 12 - 25% of people who have posttraumatic stress disorder (PTSD) responses after life-threatening medical events such as heart attacks, unstable angina, TIA's and strokes. The response they describe is similar to traditional posttraumatic stress disorder but is said differ from it in four ways:

1. The initiating event and continuing source of threat come from within the body rather than the external environment so there is nowhere to go to escape the threat. 
2.  The person's threat-oriented thoughts and intrusions are focused more on the dangers of the present and future than memories of a past event. Because the underlying illness persists, there is constant concern regarding a present or future recurrence of the life-threatening event or something similar. 
3.  Avoidance behaviours focus on reducing reminders of current and future cardiovascular risk rather than triggers of a past event. (eg Patients may avoid prevention medications and physical activity because they are reminders of the continuing threat.)
4.  Hyperarousal behaviours and their consequences are also different from traditional PTS. People become hyper-aware of internal body sensations vs external environmental cues (fear becomes velcroed to an increased heart rate, irregular heartbeat, breathlessness, the first stirrings of chest pressure or pain, slurring of speech, loss of balance, numbness, tingling etc).

While I'm not completely sure that all the above distinctions are true distinctions - perhaps it's more a matter of both-and than either-or when it comes to past and present/future somatic threat - it will be interesting to see how this research progresses and whether it begins to explain some of the differences we see between "patient" and family caregiver manifestations of Chronic Sorrow.

I think it is wonderful that medical and psychologically-oriented folk are working together to explore the traumatic impact of life-threatening events on their patients and families. I am hopeful that they will include previous research on Chronic Sorrow and Somatic Experiencing in their explorations and models so that grief and trauma can be addressed together (they're usually entwined in serious chronic illness) and that somatic treatments will be considered for this somatic distress.

If you are interested in reading some scholarly articles about enduring somatic threat, perhaps begin with the articles below:

Edmondson, Donald E.  An enduring somatic threat model of posttraumatic stress disorder due to acute life-threatening medical events. Soc Personal Psychol Compass. 2014 Mar 5; 8(3): 118-134.


Edmondson, DE et al. A challenge for psychocardiology: Addressing the causes and consequences patients' perceptions of enduring somatic threat.  American Psychologist. 2018 Vol. 73, No 9, 1160-1171.








Thursday, June 13, 2019

Jan's Summer Reading 2019 ...




Fill your house with stacks of books,
in all the crannies and all the nooks!

Dr Suess



Hi Everyone!

I've just finished the last workshop of the season, the new Compassion Fatigue: Going Deeper - Trauma, Spirituality and Resilience, and it went wonderfully well according to the evaluations. So now I can turn my face to the long, happy days of summer with the wedding of my goddaughter, Rebecca, at the end of the month and, two days later, a flight to Toronto followed by the long drive and boat ride to the Kahshe Lake cottage of friends. There I'll enjoy two glorious weeks of rest, writing and rejuvenation. (Thank heaven for dear friends willing to share their waterfront retreat!)

As usual, I'm having trouble deciding how many books I can fit in my suitcase! Here's the list from which I'll be choosing this year:

1.  Work Fuel: Boost Performance. Improve Focus. Eat Your Way to Success. by Graham Alcott and Colette Heneghan. (2019)
This book focuses on viewing food as fuel and making choices that will give your brain and body the best chance for optimum performance. For those of us who work (pretty well all of us) it promises ways to boost energy and productivity and fit healthy eating into already busy lives. I'm a sucker for books on healthy eating and this book's post-it phrases like "ditch the al desko lunch" and "be a fuelie" promise a light touch.
2.   The Art of Typing: Powerful Tools for Enneagram Typing by Ginger Lapid-Bogda. (2018)
This new-to-me book by one of the organizational experts in the Enneagram field, is written to help people to type themselves or to help them type others in a more accurate way. It offers detailed differentiating questions to help others clarify their type and, specifically, to differentiate between type pairs from the nine Enneagram personality types. I like Ginger's straight-forward teaching style and look forward to gleaning some new pointers in Enneagram typing. (If you're interested in the amazingly accurate and powerful Enneagram, I will be offering a beginners workshop on Friday November 22nd on Granville Island. You're very welcome to join us!)
3.  Life on the Ground Floor: Letters From the Edge of Emergency Medicine by James Maskalyk, MD (2017)
This award-winning memoir has been waiting on my shelf for the past year and, remembering my own years in critical care nursing, I'm looking forward to hearing how things have changed (or not) as I've gone off in other directions. I understand that it is a somewhat raw read so it may be a book to pace slowly over a couple of weeks.
4.  Rumi's Little Book of Life: The Garden of the Soul, the Heart and the Spirit by Rumi and Maryam Mafi (Translator) (2012)
A collection of 196 poems, previously unavailable in English, from the 13th Century Sufi poet, Rumi, focusing on coming to grips with the inner life. This small book is a guide to the inner journey, one which I hope will make a good companion for contemplation on quiet sunrise mornings by the Lake.
5. Braving the Wilderness: The Quest for True Belonging and the Courage to Stand Alone by Brene Brown (2017) My good friend, Sandra, and I have been reading this book together -  she, as she faces into widowhood after years of carepartnering and me, as I make one more attempt to complete a book on chronic sorrow. For each of us, there is a sense of vulnerability and an enhanced perception of what Brene calls "the wilderness" as we walk our individual paths. Brene defines the wilderness as an untamed, unpredictable place of solitude and searching, a place as dangerous as breathtaking, as sought after as feared. It is where we show up as our true selves and brave uncertainty, standing alone, and potential criticism. 
6.  Slow Dancing With a Stranger: Lost and Found in the Age of Alzheimer's by Meryl Comer (2014) This is a re-read for me. Since I first opened the pages of this book five years ago, three friends have been diagnosed with early onset dementia and I want to go through Meryl's poignant writing once again to resensitize myself to the experience of spousal caregivers dealing with dementia. (I say "re-sensitize" because I've often thought that caregiving is a little like labour and delivery - excruciating in the moment but the intensity is gradually forgotten once the pain ends.)
7.  The Black Ascot (2019) and A Forgotten Place (2018) by Charles Todd.  These books will provide my escape reading while lying on the dock. Each is one of a series - the former about a British police inspector returned from World War I with shell shock or PTSD and the latter about, Bess Crawford, a returned WW I nursing sister. Both struggle with personal demons as well as a murder mystery in each volume in the series.

So, there's the list for this summer. I intend to enjoy as many books as I can while at the cottage and hope you might enjoy a few of them as well.