Sunday, December 23, 2012

Peace ...


Dear Readers,

In a world torn yet again by the deaths of children, the atrocities of war, the ravages of illness and poverty, and the pain and grief of those who attempt to respond to suffering with reason and compassionate action, I offer you this holiday gift of an ancient Celtic prayer for peace.

May it be for all of us who care, (in the deepest sense of that word), a source of light, hope, grounding and strength to carry us through this holiday season and beyond.


Peace in All

In your walking - Peace
In your talking - Peace
In your life - Peace
 In your strife - Peace
In your seeing - Peace
In your being - Peace
In your days - Peace
In your ways - Peace
In your night - Peace
In your plight - Peace
In your reason - Peace
In every season - Peace


Deep peace to each of you in this Season of Peace.

With love,  Jan





Thursday, December 20, 2012

Winter Solstice: The Darkness and the Light ...


Friday will mark the Winter Solstice, the time of year when we experience the shortest day and the longest night as the sun reaches its most northerly point above the equator.

Across our history, we have marked this day as one of particular significance. Faith traditions of all sorts have celebrated this point in the year's cycle, facing expectantly into the return of the light. We celebrate the fact that from the solstice onward, each day will bring a little more life-sustaining brightness.

But for some care-givers, there is little light on the horizon, little brightness to anticipate. The notion of the returning light seems a distant possibility at best, highlighting the particular darkness of their worlds. They feel isolated and cut off from the joy of the solstice because the light seems so far outside their everyday experience.

But even those who feel shrouded in the darkness of ongoing care-giving or compassion fatigue can celebrate the solstice authentically. By fully experiencing the darkness, we can, paradoxically, open to the possibility of experiencing the light.

When we examine our own particular darkness, see its shades and colours, explore its pathways, recognize how we experience times when seeing is difficult, and acknowledge times that ask us to open to whatever-lies-beyond-what-we-know, we can apprehend the "gifts" of the darkness.

When we believe that there are treasures in the darkness, we can rest in it more easily, allowing ourselves to stay present, moment-by-moment, even in the hard times. As author, Jan Richardson, puts it:
If we are not willing to journey through the darkness, we cannot understand how the light begins. Where it comes from. How it makes its way into the world as grace and gift, as illumination and revelation, calling us to bring forth the treasures we have found along the shadowy way.
It is through our experience of darkness that we can recognize and develop the personal gifts - compassion, patience, courage, love, tenacity, endurance, strength, psychological and spiritual growth - that will eventually accompany us into the light, and contribute to our ability to become weller-than-well.

So, if darkness is your truth this Winter Solstice, allow yourself to acknowledge it, be with it, and let it guide you through to the first glimmerings of light and beyond.

  


Sunday, December 2, 2012

Memories of AIDS ...


It was a Sunday afternoon when a familiar voice whispered down the phone line saying, "Hi Jan. It's been a long time."

With these few words came back a wealth of memories, for the quiet voice at the other end of the phone belonged to my high school English and Journalism teacher, Barry. We hadn't spoken in a number of years, out of frank neglect on my part and on his, out of false assumptions based on his unwarranted shame and on my marriage to an Anglican priest and spiritual director. (Despite the closeness of former days, he'd feared the censure and exclusion he'd found amongst his own church members.)

Barry was calling to tell me that, after years of depression and addiction, he had finally come out; dissolved his marriage; entered recovery; met his partner, Jim; and been diagnosed with AIDS. He hadn't long to live.

My initial response was one of anger, then profound grief. Why hadn't I kept in touch? Why hadn't he called me when he'd first been diagnosed? Why had he waited until now when there was so little time left? I felt cheated of time and heartsick.

Over the next six months, we met several times - Barry and Jim, and my husband and me. Barry and Derrick met alone, as well, hashing out their similarly liberal theologies in various coffee shops around the city until Barry could face his death, fairly sanguine and with at least modicum of peace. After he died in a hospital palliative care unit, boney body racked with coughs, Derrick took his funeral in a West End church and we, his loving community, grieved our loss together.

Today, the day after World AIDS Day, many years later, I remember Barry fondly as an extraordinary educator, mentor, and friend who helped me and many other students to transcend painful life experiences and thrive. He taught me to love poetry, to use white space to advantage in a layout, and to never use two words when the one "right" word would do. He also taught me, a painfully shy and pathologically self-sufficient teenager, that it was alright to ask for help.

Barry loved to teach and his students loved him. That same love allowed us to support him, and he us, through the end of his life.  Every year, I wear a red ribbon in his honour and memory and I try to keep the ripple of his love going out into the world in some way. This year, a friend told me about an organization that knits baby dresses for African babes with AIDS who would otherwise be sent home from hospital wrapped in newspaper for warmth. So, I've been knitting dresses for the past several weeks, stitching love and healing intention into each garment.

I hope and pray that the day will come when no one needs to see a beloved teacher and friend fade away or to behold a new baby wrapped in the newspaper and stigma of AIDS. Please do have an HIV test if:

  • You have had 2 or more sexual partners in the past 12 months.
  • You have received a blood transfusion prior to 1985.
  • You are not sure about your sexual partner's risk factors.
  • You are a male who has had sex with another male.
  • You are using street drugs by injection, especially when sharing needles or other equipment.
  • You have a sexually transmitted disease (STD).
  • You are a healthcare worker with direct exposure to blood on the job.  

And why not consider supporting your local HIV/AIDS research, treatment and support organizations, financially or through your volunteer hours, so the ripple of love continues.






Tuesday, November 27, 2012

15 Simple Suggestions for A December Grief ...



The holidays?

Most of us grievers
would just as soon be sick through 
the whole shebang!

Meg Woodson


Whether you are a family caregiver coping with episodes of holiday-triggered chronic sorrow or a helping professional deep-sixing accumulated grief after a series of workplace deaths or a bereaved former caregiver facing your first aching holiday season without your partner, friend, parent or child, a December grief can be a cold and unwelcome experience. How does one grieve in a world alight with joy and anticipation?

There are only individual answers to this question but it may help to hear some of the suggestions penned and spoken by those who have walked the path of holiday grief before you:

1. Don't let anyone take your grief away. It is yours, your pathway to healing, and you need it to knit together the pieces of your broken life.
2.  It's your holiday and you can cry if you want to. Crying alone or with loved ones can be deeply healing and will ease the stress of holding back the tears. If you want to cry and find that you can't, try using a movie, poem, story or piece of music that has triggered your tears in the past.  
3.  Count on having an imperfect holiday. It removes the pressure and you won't be disappointed through having unrealistic expectations.
4.  Listen to your body as you make your plans. If a proposed plan makes you clench and causes your heart to race, don't follow it.
5.  Choose the aspects of the holidays that you find most comforting - the card writing, the baking, the religious rituals, the lights and decorations, the music, the entertaining, spending time with children, phoning old friends, attending plays or concerts, taking a vacation. Focus on those parts and leave the rest for next year. If nothing appeals and you just want to go to bed and cover your head with a comforter, that's fine too.
6.  Beware the unconscious numbing of painful feelings through compulsively eating holiday sweets, drinking alcohol, taking prescription drugs, over-exercising, over-spending, surfing the internet, and other "socially acceptable" practices. They may help the pain in the short term but they will complicate your grief over the long haul.
7.  The holidays are full of activities and invitations. Your first response may be, "I can't do this." Consider trying. Stay only as long as you're comfortable. Arrive late, leave early. Tell your hosts that you won't know how you will feel until the time comes and excuse yourself in advance for leaving early or not arriving at all.
8.  Create space to be alone. Leave time to be alone to absorb your feelings. You can use times of solitude to allow memories, both good and bad, to surface. It is also a good time for self-care. You may find you need more rest than you do normally. 
9.  Buy and wrap a gift to place under the tree to replace the one your loved one would have given you. (Or ask a friend to do your ill loved one's shopping.) It won't be the same, but it may help to fill the gap.
10.  When you're out and about, carry a list of phone numbers of close friends and family members you can trust to be understanding and supportive. Call one of them if you find that your grief has been triggered by reminders of life before the illness or the death. If you can't reach the first person you call, call the next one on the list and continue until you find someone who will give you a kindly ear and a telephone hug.
11.  Spend time with other grievers who understand your situation. It can help to be with others who understand without much explanation.
12.  Consider attending a "Blue Christmas" or similar service during the weeks before the holiday. (They're usually listed in your neighbourhood newspaper or on the Internet.) 
These services for people who are sad at the holidays are usually small, quiet, candle-lit gatherings with sensitive readings, soft music and reflective addresses designed to help you grieve as others celebrate. They are generally arranged so that you can stay for a cup of tea and support afterwards or slip away into the night.
13.  Journal your grief, your anger and your gratitude. The holidays tend to offer many opportunities to bite your tongue as people make inept attempts to comfort you. It's better to write your feelings in your journal than to act them out in the moment. 
Over time, your journal writings can also help to balance your remembrance of life before the illness or before your loved one's death. (Many of us pine for an idealized past that never actually existed.) Date your entries so you can look back and track your experience over time.
14.  Visit the cemetery or scattering ground. There is nothing morbid about visiting a loved one's grave. You might want to ask someone to drive you there but not visit the grave with you or you might want to go alone and then visit with a supportive friend afterward. 
You could take a wreath, fresh flowers, or a candle to decorate the grave. (And, perhaps, an unremembered grave of someone unknown to you.) You could also read a favourite passage, say a prayer, share your holiday plans, or just sit and share the silence. (Take a warm rug or a hot water bottle to hold if you want to sit awhile.)
15.  Ease the work of the holidays.  Be careful not to overwork. Pay someone to clean your house or ask several family members and friends to help with an hour-long cleaning blitz. Use wreaths and greenery to decorate your home instead of putting up a tree. Cut back decorations to a few favourites. Buy your baking. Draw for family gifts. Shop using the Internet or catalogues. Give gift certificates. Have a pot-luck holiday dinner, order in, or go out for a meal - or just gather for dessert and coffee at someone else's house.
 Whatever your final plans, may each of you who grieves this holiday season find love and comfort in the warm embrace of family and friends.
    
   

Tuesday, November 20, 2012

6 Soothing Self-Care Holiday Gifts ...


Hello, everyone! I'm glad to be back with you after a busier-than- usual month of teaching, writing and caring for an elderly friend who's had a number of TIA's and falls.

As many of you will know, I love Christmas and everything that leads up to it. But like you, I suspect, all the preparations and festivities can leave me feeling tired and frazzled unless I pay some particular attention to my self-care plan.

This year, I've found some wonderful self-care gifts that you might want to wrap up for yourself or to share with someone you love:

1. A Therapeutic Touch session: Therapeutic touch is a "hands-off" energetic process that promotes relaxation, decreases anxiety, alleviates or reduces pain, accelerates healing, and creates feelings of calmness, peace, well-being and balance in anyone seeking health maintenance and balance. There is an abundance of good research showing the benefits of TT and, oh my goodness, does it work!
Years ago, while I was writing my Master's thesis and stressed out of my mind, my husband (an advanced TT practitioner) decided to gift me with a TT session during his early morning meditation time. I was still in bed but later, when I got up for breakfast, it was all I could do to keep my head off the kitchen table, so relaxed was I!
2.  The Crazy Sexy Kitchen Cookbook: Kris Carr is a New York Times best-selling author, wellness advocate, cancer thriver and subject of the documentary, Crazy, Sexy Cancer.  In her great wellness cookbook, she says that our futures are being written with every meal - both a sobering and a hopeful thought.
This cookbook is an encyclopedia of delicious-ness with beautiful photography and mouthwatering vegetarian recipes. A great gift for cooks and eaters alike!
3. A new "colouring book": Colouring Mandalas: For Insight, Healing and Self Expression was created by Licensed Professional Counselor and Registered Art Therapist, Suzanne Fincher.
The word mandala comes from the classical Indian Sandskrit language. Loosely translated, it means "circle". A mandala is more than a pleasing circle, though. It symbolizes wholeness and is an integrated structure organized around a unifying center. 
In Buddhist and Hindu traditions, sacred art often takes the form of a mandala and Christian churches' rose windows are of mandala design. Tibetan Buddhist sand mandalas are some of the most exquisitely beautiful art forms I've seen.
Colouring a mandala is known to induce a relaxation response, bring order to chaos, draw attention away from the stimulation of the outer world, and offer opportunities for insight, balance and harmony. And it's a great activity to share with children and grandkids. This particular mandala book is available through your favourite on-line bookstore, or in Vancouver, through Banyen Books.
4. A typing interview with an Enneagram professional: Learning your Enneagram (ennea = nine and gram = picture) personality type is a gift that lasts a lifetime. It begins an adventure of self-discovery and personal growth that can help you to understand and be more compassionate with yourself and with others. It will also offer a lifelong path to becoming your best and most authentic self.
While it is possible to learn your type through books and on-line resources, an Enneagram workshop or an individual typing interview with an Enneagram professional can help you to make a more accurate determination of your type. (The Enneagram shows us both our strengths and shadow side and we all have a tendency to sidle away from acknowledging our shadow side.) A good Enneagram teacher or counsellor will gently hold up a mirror so you can see your reflection more accurately. 
There are several "schools" and training programs of Enneagram theory. Try to find someone who is certified in a school that resonates for you. You can start looking for a local practitioner through the Enneagram Worldwide or The Enneagram Institute websites.
5. Daily Joy: 365 Days of InspirationThe National Geographic Society has published a lovely new daily reader just in time for the holidays. Daily Joy is a beautiful collection of 365 National Geographic photographs, each with a short inspirational quotation and I have to admit that I'm dipping into my copy already. 
This book is ideal for early morning contemplation or for a calming thought at the end of the day. Divided into 12 monthly sections, it covers topics such as renewal, love, authenticity, growth, courage, perspective, adventure, purpose, freedom, fulfillment, wisdom and faith.
6.  Peggy Cappy Yoga DVD: I've never been particularly drawn to the notion of yoga but, during a recent PBS donation campaign, I was introduced to Peggy Cappy's Yoga For the Rest of Us DVD's. Now, I'm hooked. I use her DVD's three times a week between my aquafit classes and I love them.
The Back Care Basics  DVD is a particularly good gift for those of us whose caring work involves lifting, carrying or steadying those who are unsteady on their feet.   
 I hope these few ideas will help to make the holidays less stressful for you all. If you have any other ideas to add to the self-care gift list, we would all be glad to hear them!




    

Monday, November 5, 2012

Teachers and Compassion Fatigue ...









... I remembered Bill, who was murdered in Texas the year after I taught him in sixth grade; Brian, who died in a car accident just after high school graduation; and Catherine, who struggled with a brain tumour in second grade.
 As teachers we feel the children in our classrooms become part of our lives. We witness them growing, learning, and becoming. Sometimes we witness and experience their tragedies as well. ...
Marj Vandenack in
Teaching With Fire: Poetry That Sustains the Courage to Teach
Sam Intrator and Megan Scribner, Editors


I have had three requests for Compassion Fatigue (CF) workshops for teachers in the past week (a really good thing!) but when I mentioned the fact to a neighbour, she laughed out loud and asked what on earth teachers needed with a compassion fatigue workshop. After all, they had easy jobs, short days and long vacations - what more could they ask?

My response was that, though sometimes maligned for just those reasons, teachers and teachers aides are as much at risk for CF as other helping professionals. They are confronted daily with students whose lives have been upended by trauma - trauma as varied as birth trauma; physical, sexual or emotional abuse; war, torture, or immigration trauma; poverty or privilege; chemical dependency; natural disasters; or medical trauma. Frequently, these students lack the resources to heal their emotional wounds and, thus, suffer a diminished capacity to learn. They and/or their families may share painful trauma stories and lean heavily upon their teachers for the care they cannot find in other places.

Emily Noble, past-president of the Canadian Teachers' Federation, has said:
I think that the whole idea of teaching has changed in the last 15-20 years. ... People are dealing with more high-need students, with more multicultural issues, and with no-fail policies. ... Teachers want to make a difference, but the supports are just not there."
And so, even (or especially) the very best of teachers are falling by the wayside. They push too hard, within a culture of expected endurance and self-sacrifice, to accommodate both an increasing administrative burden and the special needs of traumatized students. The result is increased sick time and the eventual attrition of excellent teachers.

One study of urban Saskatchewan teachers, by Ron Martin and Rod Dolmage of the University of Regina, indicates that 61% of respondents reported becoming ill due to stress, 40% had had to take time off work due to stress, and 51% would leave teaching if they could find an alternate career. (!)

Fortunately, CF is beginning to be acknowledged, alongside burnout, in education circles. As leaders in education learn about CF and adjust organizational policies to increase support and decrease trauma exposure in their teachers, the impact of trauma can decrease and the people and process of teaching and learning can be renewed.

Some CF research and resources for teachers include:


1.  Hooker, S  (2012)  The Cost of Caring   
http://www.teslontario.net/uploads/publications/contact/ContactSummer2012.pdf
2.  Hamilton, M  (2007)  What School Leaders Need to Know About Secondary Traumatic Stress
http://beyond-balance.com/documents/leadersarticle.pdf
3.  Marsay, G and Higson-Smith, C  Exploring Compassion Fatigue and Trauma in the South African Learning Environment
http://www.learningandviolence.net/violence.net/violence/MarsayViolence.pdf
4.  Wolpow, R et al (2009)  The Heart of Learning and Teaching: Compassion, Resiliency, and Academic Success
http://rems.ed.gov/docs/OSPI_TheHeartofLearningandTeaching.pdf 
  

    

Tuesday, October 30, 2012

The Trauma of Hurricane Sandy ...




May there be peace in the midst of the storm
and hope in all the days that follow. 




I've just been watching some of the coverage of the damage wrought by Hurricane Sandy, both in the United States and in Canada, and my heart goes out to everyone affected. I think, particularly, of the first responders and of all those whose work will take them out into the elements and into the path of danger in the days and weeks ahead - also, of all the family caregivers who already experience trauma and loss in their everyday existence and who must now cope an additional layer of traumatic stress. And, of course, there are those who have lost loved ones and homes. And those living with terrible uncertainty regarding loved ones' whereabouts and safety.

We all experience some traumatic events in life but there are ways to keep longterm trauma effects from developing. You can help. I'd like to share with you (with permission) the first two stages of the trauma first aid steps developed by trauma expert, Peter Levine:

First Aid for Adults:
Stage 1:  Immediate Action (At the Scene of the Traumatic Event) 
1.  If life-saving medical procedures are required, that must take precedence.
2.  Encourage a sense of safety. Keep the person warm, lying down, and still, unless they face further danger by remaining where they are. Don't let them jump up and move around, which they might be tempted to do. The feeling of having to do something, to act in some way, can override the essential need for stillness in order to discharge unused fight or flight energy. They may want to deny the magnitude of the traumatic event and might act like they are fine.
3.  Stay with the traumatized person. Assure them that you will stay with them or that help is on the way. When help does arrive, continue to stay with the traumatized person if possible.
4.  Encourage the person to fully experience their bodily sensations. These may include adrenaline rush, numbness, shaking and trembling, feeling hot or chilled. 
5.  Stay fully present. What you do and say can help the person discharge the trauma energy. Let them know it is not only okay that they shake, but it is good, and will help them release the shock. They will get a sense of relief after the shaking is completed and may feel warmth in their hands and feet. Their breathing should be fuller and easier. This initial stage could easily take 15 - 20 minutes.
6.  Don't go it alone.  Get someone to help you process the event afterwards.

Stage 2:  Once the Person is Moved Home, to the Hospital or to a Shelter
1.  Allow time for processing.  Continue to keep the traumatized person quiet and resting until they are out of the acute shock reaction. Traumatized people should always take a day or two off work to allow themselves to reintegrate. This is important even if they perceive that the trauma doesn't justify staying home. This resistance can be a common denial mechanism and defense from feelings of helplessness. A day or two of rest is good insurance.
2.  Allow the emotions to be felt without judgement. The trauma survivor is likely to begin experiencing a variety of emotions, such as anger, fear, guilt, enxiety. There might also be bodily sensations, such as shaking, chills, etc. This is still fine.

For information on the third stage of Trauma First Aid and for more information about healing single event trauma, I would recommend Peter Levine's, Healing Trauma: A Pioneering Program for Restoring the Wisdom of Your Body.





   

Monday, October 29, 2012

Music to Soothe the Savage Breast ...



             

Musick has Charms to soothe a savage Breast,
To soften Rocks, or bend a knotted Oak.

William Congreve 
 The Mourning Bride
(1697)


Do you want to calm the cacophony of thoughts and feelings filling your head and your "savage breast" after a long day at work -  or an even longer day's caregiving at home? Researchers say that making or listening to music can help calm your nervous system, boost your mood and reduce your anxiety. In fact, according to a review of 22 research articles, music alone and music-assisted relaxation exercises can significantly decrease nervous system arousal due to stress.

It doesn't seem to matter what kind of music you listen to. The important thing is that the music is a good fit for your individual musical preference, previous music experience, and the sort of stress response you're experiencing. (ie Upbeat music will energize you when you're feeling down and soothing music will calm you if you're feeling anxious.) That said, several studies have acknowledged the particularly effective soothing power of classical music.

We're not sure how music works its magic. Perhaps it is its ability to absorb our attention; perhaps, its capacity to distract us; or perhaps, its tendency to connect us with our emotions. However it works, adding music to our days can have a profound effect on our sense of well-being.

Over the years, I have compiled an eclectic list of musical pieces that is my go-to list for relaxation or a little cheering up. It includes, (and I'll really date myself here!):


To Calm and Soothe:
1.  Ladies in Lavender Soundtrack 
2.  Mozart for Mothers-to-Be
3.  Carolyn McDade's As We So Love
5.  The (British) National Trust's  "Time for Tea" Collection
6.  Enya's A Day Without Rain and Watermark
7.  Gloria: The Sacred Music of John Rutter
8.  Daniel Kobialka's  Fragrances of a Dream
9.  John Lennon's Imagine
10. Simon and Garfunkle's Bridge Over Troubled Waters
11.  Truly, Madly, Deeply Soundtrack
12.  The Rankin Family's We Rise Again 
13.  At Christmas:  Marty Haugen's Night of Silence ... 
  
 To Energize:
1.  Mozart's Clarinet Concerto
2.  Schubert's Trout Quintet
3.  Ketelbey's British Light Music
4.  Abba's Mamma Mia
5.  Simon and Garfunkle's 59th Street Bridge Song (Feelin' Groovy)
6.  John Denver's The Essential John Denver
7.  The Beatles
8.  The Beach Boys
9.  Carole King's Tapestry
10. Bach's Brandenburg Concertos 

What about you? Do you have favourite music for relaxing and getting recharged? How long is it since you've had a listen?






Friday, October 19, 2012

All Souls Night ...


Have you ever had one of those moments when you've thought, "How could I not have known about that?"? I had one on Wednesday morning when a friend told me she was going to the 8th Annual All Souls Night at Mountain View Cemetery, (Vancouver's only cemetery), on Saturday October 27th.

The 8th Annual All Soul's Night?? I hadn't known there had been a first, and I tend to have a pretty good idea about what's going on in the City. When I got home, I googled the event and found that it is sponsored by the City of Vancouver Department of Parks, Recreation and Culture and is described, thus, in their calendar of events:
Community event. An atmosphere of contemplative beauty with music, warming fires and fragrant teas to comfort the living, and public shrines to remember the dead. 
Candles, flowers, and other materials will be available for the creation of personal memorials.
There will be an opening prayer at sundown. 

For those of you who are unfamiliar with the tradition of All Soul's Day, its origins in European folklore and beliefs are related to the honouring of ancestors, a practice seen throughout the world in events such as China's Ghost Festival, Japan's Bon Festival, and the Mexican Day of the Dead. 

All Souls Day became a formal part of the Western Christian tradition in 998 AD when the Benedictine Abbot of Cluny (a powerful monastery in medieval France) designated it a day of prayer for the souls in purgatory. (As opposed to those already in heaven, for whom prayers were offered on All Saints Day, November 1st.) Over the years, some churches have fused the two days and others, particularly those of the Eastern Orthodox tradition, now celebrate All Souls days at several times during the year.

In Europe, the French decorate the graves of their dead on the jour des morts and the German, Polish and Hungarians leave gifts of flowers and special grave lights at graveyards once a year. The Czechs visit and tidy the graves of relatives on this day and the people of Malta make pilgrimages to graveyards to remember all the dead, not just their relatives.

In other countries, special foods and church services mark the day. For example, in Tirol, special cakes are left out for the dead and the room is kept warm. In Brittany, people kneel at the graves of loved ones and anoint the hollow of the tombstone with holy water and in Brazil people attend mass or visit the cemetery with flowers for the grave.

Regardless the form of these rituals, I think it's the fact of the rituals that matters here. We humans need rituals because they provide opportunities - opportunities to remember loved ones who have died, to tell their stories, to grieve once again with the support of family and community, and to celebrate life. As church and other providers of ritual grow less relevant in the lives of many, I think the City of Vancouver is to be congratulated for creating this opportunity to remember and I hope you will  take advantage of it if you can. I certainly shall.


ps  I received an email today with additional information regarding the Mountain View All Souls celebration.  The celebration actually covers six days:


  • October 18  7pm  Orientation and creation of personal shrines
  • October 20  1-3pm  Sugar skulls workshop (Registration required)
  • October 27  6-10pm  Night for All Souls
  • October 28  7pm  Threshold Choir
  • October 30  7pm  Screening of film - Forever - about Pere-Lachaise Cemetery in Paris
  • November 1  7-9pm  Orkestar Slivovica Balkan Brass band  performs at Vancouver Crematorium and Celebration Hall, with a procession through the shrines to honour the dead. 




Friday, October 12, 2012

My Leaky Body ...


Hi everyone! I am halfway through a great new book described as part memoir, part love story, part revolutionary manifesto and I want to recommend it to you.

My Leaky Body, written by Julie Devaney, or GI Julie as she calls herself, tells the raw and honest story of her journey through the diagnosis and treatment of chronic inflammatory bowel disease, a journey made within Canada's healthcare system.

As the back cover of the book says,
Based on her popular one-woman show, My Leaky Body lays bare the deficiencies in health care, creating a road map for patients and for all those who want to transform the system.
In the language of a born storyteller, Julie Devaney moves and enlightens readers as she describes both the compassion and compassion fatigue with which she is treated during multiple interactions with healthcare professionals. She is on a mission to change a system she describes as overworked, underfunded and badly in need of some bedside manners. Unusually, she is able to make her observations, critiques and suggestions without blaming or shaming.

Devaney advocates for a concerted focus on shifting away from our trend toward private healthcare and she pushes for changes in healthcare funding and training in order to reduce the emotional pain experienced by both patients and families and healthcare professionals.

While the details of Julie's story are uniquely her's, I found that they reflected many of my own lived experiences with the chronic illnesses of my husband, mother, nephew, and three dear friends. She understands the need for more trust, compassion and connection among helpers and helpees, calling for a system that is much more egalitarian, collaborative and personal. With the health policy advocacy of people like Julie Devaney, we can all have more hope for better days in healthcare.

Julie was interviewed about her book on CBC's, The Current,  and you can find the full half hour interview here.

Her blog at the Huffington Post - Canada can be found here.





Thursday, October 4, 2012

In Thanksgiving ...



We can only be said to be alive in those moments when our hearts
are conscious of our treasures.

                                              Thornton Wilder



As Thanksgiving weekend approaches, our hearts and minds turn naturally to thoughts of gratitude.

For many, life is overflowing with riches and it is easy to acknowledge the things that make our hearts sing. For others, hearts heavy with compassion fatigue or chronic sorrow, it may be more difficult to find things for which to be grateful. In times like these, it can help to turn to the small things - the ordinary, everyday relationships and experiences we tend to take for granted.

When we begin to remember the small things, our gratitude takes on a life of it's own, changing our perspectives and filling us with hope. This morning, as I drove about doing last minute errands before leaving for Vancouver Island for the holidays, I began my own list of "small things":

1.  A warm pair of gloves for the first cold steering wheel of the season.
2.  A new book by a favourite author to take away on holiday.
3.  The golden sunshine playing on the leaves of the tree at the corner.
4.   A carpet to step on as I got out of bed this morning.
5.  Vegetables from the farmers market for Thanksgiving dinner.
6.  A loving postcard from a dear friend, far away.
7.  Regina at the All Day Cafe who always greets me with a smile.
8.  The cozy fragrance of cinnamon and apples and the ability to smell them.
9.  The joy and laughter of a grandmother greeting her little red-headed grandson at the Quay this morning. ("I've missed you soooooooo much!")
10. A reservation for the ferry even if it means getting up at 4 am tomorrow.
11. A new tip for cooking squash - roast the squash whole for the first 20 minutes, until it begins to soften, then take it out of the oven and slice it to size and roast for another 40 minutes.
12. The scent of the last New Zealand rose of the season.
13. The anticipation of seeing my goddaughters and hearing their stories when I get to Nanaimo.
14. A basketful of tulip bulbs to plant for the spring.
15. The pleasure of hearing old familiar Thanksgiving hymns when I visit my Benedictine friends at the Retreat Centre on Saturday.

And then there's you, dear readers. I am more grateful than I can say to be able to share life with you and to receive your encouraging emails. Your energy keeps me writing and teaching and I'm so grateful. May each of you, whatever your circumstances, create a warm and very happy Thanksgiving,

Jan



   

Sunday, September 30, 2012

Winter's Coming: Protect Yourself and Others ...


Fall has arrived and with it the first round of this year's sniffles, colds and flu. I remember vividly the fear this season could engender in me and in many other family caregivers.

For our loved ones with chronic illnesses and compromised immune systems, the season of "the simple cold" spelled serious trouble. Every ride on a crowded bus, every wait in a doctor's office or emergency waiting room, and every impromptu visit from a friend who was "almost over" his or her cold felt like a life-or-death situation.

Even worse was encountering healthcare professionals who were ill on the job. These wonderful helpers had the closest kind of contact with our vulnerable loved ones and their illnesses at work presented a very real threat to us.

I remember taking my husband to the pacemaker clinic for the programming of his new pacemaker.  He was already compromised by four years of life with heart failure and exhausted from a recent hospitalization. The cardio technician was "feeling terrible" and had a streaming cold. She sneezed, coughed and blew her nose several times as she attached his ECG leads, did the programming, and taught us about life with a pacemaker. Frighteningly, at no point in this process did we see her wash her hands.

Now, there are some obvious situations where hand washing must take a back seat - when dealing with aggressive behaviour, when trying to prevent injury as someone climbs over the bed rails, or during some life-threatening emergencies. However, this was not one of those situations. The presence of a tech who had come to work while ill (with the best of intentions) and who had neglected to wash her hands, put both my husband and myself at risk - at a time when we had little or no risk-tolerance left. We needed better support than that from our healthcare system.

Continual handwashing by all levels of healthcare workers, from janitors to physicians; sufficient staffing levels for appropriate use of personal sick time; improved hospital cleaning; and organizational illness-prevention strategies such as guilt-free refusal of overtime, opportunities to take  real breaks during the day, stress reduction programs and in-house exercise facilities could have gone a long way toward making our lives safer.

So, as the days shorten and the winter illnesses blow in, may each and every one of us stop to consider the impact of our simplest choices on those most vulnerable to infection - including the family caregivers who struggle to stay well as they continue their care.

How you can help:

  • Practice exquisite self care to boost your resistance to "the winter illnesses".
  • Get your flu shot early.
  • Wash your hands before and after contact with those you want to protect - every time.
  • Never visit with or care for anyone with a serious chronic illness / compromised immune system (or his or her caregiver) until all your cold or flu symptoms have gone. (I do recognize the irony in saying this to family caregivers who may have to continue caring while they're ill - but even we who care at home could ask for help more frequently in such situations.)

       


Monday, September 17, 2012

New CF Resources for the Fall ...

Hi everyone! I'm off to teach for the Central Cariboo Hospice Palliative Care Society in William's Lake this week, but before I go, here are a couple of great new resources for your Compassion Fatigue library:

The first is a bundle of three DVD's by Compassion Fatigue Specialist Francoise Mathieu entitled, What Are Compassion Fatigue and Vicarious Trauma?. Within the bundle are sections on the difference between compassion fatigue and vicarious trauma, 5 resilience strategies, and training in low impact disclosure and debriefing.  (Each of these sections can also be purchased as a separate DVD.) This would be a wonderful resource for organizations in rural areas who have more difficulty than most in accessing training opportunities. Francoise' trademark enthusiasm and stories make this a DVD worth seeing.  Price:  $99.00 CDN


The second resource is a new free report from the School of Social Work at the University of Minnesota entitled CW360:  Secondary Trauma and the Child Welfare Workforce. It offers different perspectives on secondary trauma from the viewpoint of child welfare supervisors, foster parents, judges, rural workers and others and provides an extensive resource list and agency discussion guide for managers and staff. You can find the report at the National Child Traumatic Stress Network.  

If you should discover other new compassion fatigue, vicarious trauma, secondary traumatic stress or chronic sorrow resources in your travels, I would be very happy to hear about them and pass them on.


Saturday, September 15, 2012

Whose Choice ...?





Last weekend I wrote a post about a CBC radio series on assisted suicide. Today, CBC's White Coat, Black Art, broadcast the final installment of that series on Nagui Morcos. Here is the description of that episode:



This week, the final installment in our series on Nagui Morcos. 
Nagui first came on White coat, Black Art in 2011.  He told 
us of his intention to take his own life before Huntington's disease
robbed him of the ability to act on his own, as Canadian laws
require. Morcos had watched his father die an agonizing death
due to Huntington's. His choice reignited the debate over 
assisted suicide in Canada, and his story moved many, many
 people. Last week we aired part one of Nagui's Choice
Now, Brian takes us through Nagui's final days and hours with
the help of his wife, Jan Crowley and Meg Westley, the president of 
Dying With Dignity Canada, both of whom were present that day.


Again, I hope you will take time to listen to this sensitive rendering of Nagui Morcos and Jan Crowley's story, regardless your feelings about assisted suicide. The only way we can improve the range of life choices for people on the edge of life (and the family caregivers who support them) is to listen deeply to their experience and to engage in compassionate dialogue about the issue of assisted suicide.

You can read Dr Brian Goldman's final thoughts on this beautifully-produced series, and on his relationship with Nagui, in his blog post: Nagui's Choice: the Final Chapter - Dr Brian's Thoughts.


Friday, September 14, 2012

18 Great Ways to Celebrate the Fall ...


I know we aren't quite there yet, technically, but the past week has been so beautifully sunny and the air so cool in the early mornings and evenings, and the leaves so amazingly beautiful that I couldn't resist writing this post just a little ahead of the equinox.

As you will know if you've been reading this blog for a while, this is my favourite time of year and I like to be as mindful and intentional as possible about drinking it all in before we pass into the deeper hues of winter.

Here are a few of my favourite ideas for celebrating the fun and beauty of the fall:

1.  Collect coloured leaves as you walk along your favourite paths and bring them home to create colourful bouquets, to press as keepsakes of a happy day, or to paste on blank cards from the hobby shop to make your own personal greeting cards.

2.  Make two big pots of soup - squash, borscht, tomato-basil, lentil, carrot and ginger, and potato leek are wonderful at this time of year - and invite your favourite people to share a simple reconnecting dinner after the scattered days of summer. Serve your soup with whole grain rolls, green salad, and fresh cookies from your favourite healthy bakery and you have a delicious yet simple meal for sharing with friends. (Better still, make the soup yourself then ask each family to contribute one other course.)

3.  Find a great non-work book and snuggle up by the fire with a steaming cup of tea or hot chocolate. I've been reading a classic novel, Neville Shute's, Round the Bend, and it's been wonderful to escape into a story of places so far away, written so long ago. Some good autumn-oriented titles include I'm A Stranger Here Myself: My Notes on Returning to America by Bill Bryson, Choice Cuts: A Savory Selection of Food Writing From Around the World by Mark Kurlansky, Good Grief by Lolly Winston, A Season for Miracles by Rusty Whitener, Soup by Williams-Sonoma. 

4.  Make a fall container for your doorstep or a cinnamon scented pine cone garland for your fireplace.

5.  Take your family or friends on a bike hike. Plan a route and pace that's comfortable for the least experienced person in the group and stop often to take in the scenery. Finish before anyone becomes too hungry or tired. Perhaps plan a route past a favourite cafe or picnic spot or farmers market. And don't forget your helmets.

6.  Go and pick apples at a nearby orchard farm then come home and make applesauce for the freezer and baked apples for the pickers!

7.  Hold an Equinox celebration. Historically, a fall equinox celebration was held to give thanks to the gods for the bounty of the harvest. Even if you're not a farmer, you could hold a modern gathering with friends. Hold the celebration within the context of your own faith tradition. Light a candle. Invite family and friends to write something they're thankful for on a slip of paper and place the papers in a bowl. Form a thanks-giving circle around the candle. Sing a few autumn-themed songs then give thanks for:

  • your home, finances, and health,
  • the knowledge you've gained,
  • the successes in your career, and
  • your spiritual growth and development over the past year.          

Read a blessing or a short story for the fall, sing some more appropriate songs and, afterwards, read the thanksgivings from the bowl while sharing some pumpkin pie and mulled cider or apple juice by the fire.

8.  Take your kids (or borrow some) and make a visit to the local pumpkin patch. Choose a pumpkin and make a jack o'lantern and pumpkin muffins.

9.  Visit a favourite yarn shop and browse through the beautiful yarns and patterns until you find exactly the right project for the long winter evenings ahead. Or try going to your closest lumber yard for just the right piece of wood to carve.

10. Go to a fall fair with your partner or your best friend. It's a great way to sample delicious organic produce and to do a little shopping ahead for the holidays. Buy some unfamiliar, in-season produce and learn how to cook it.

11.  Go to your local coffee shop and buy a pumpkin spice latte to enjoy outside while you look at the leaves. Or make your own at home.

12.  Put your garden to bed, thanking it for its abundance.  Plant daffodil and tulip bulbs in the garden or in containers, full of hope for the spring.

13.  Take a walk with your camera early on a brisk autumn morning and take pictures of spider webs covered in dew or frost as the sun comes up.

14.  Do some reflective writing in your journal. What are your favourite things about autumn? Write about them in detail. If you don't like the fall, write about why. Go outside and notice exquisite details about nature in the fall - write some haiku to capture the moments. Write about things for which you're thankful. Write about how you feel about the changing seasons, or about the changing seasons of life. Write about the impact of fall colours on your mood.Write about one of the five senses related to your autumn experience (the smells, sights, sounds, touch, tastes of autumn). Write about your favourite fall memory. Ask what you might like to take from the slow days of summer into the fall.

15.  Visit an older or shut-in relative or friend - or a new Mom or a family caregiver - with homemade jams or preserves or some fresh produce from the market. (Fresh fruit and vegetables are often beyond the means of those on fixed incomes.) Plan your day so you're not rushed and have the time for a good visit or for a short trip out for lunch or tea. (Provided the one you're visiting has the energy).

16.  Offer to do some yard work for someone who is not able to manage it themselves.

17.  Give some of your garden produce to the food bank.

18.  Take a fall vacation. The rates are cheaper, the sights are less crowded and the weather is usually great.




Saturday, September 8, 2012

Whose Life ...?


I was driving home from the farmers market this sunny Saturday morning when CBC's White Coat, Black Art  came on the radio. With a synchronicity that made me gasp, I heard Brian Goldman announce that the topic of today's, and next week's, special broadcast was Nagui's Choice the story of Nagui Morcos' difficult decision to end his life before he died naturally of the Huntingtons Disease that had also claimed his parents' marriage and his father's life years before. As one of his father's caregivers, he knew what lay ahead and he determined not to die in the same way.

What made me catch my breath as I heard the broadcast introduced was the fact that today is the anniversary of my husband's refusal to take further life-saving medication in order to allow his heart failure to "take its natural course". His death, three week's later, was a more passive ending than Nagui's but still a deeply considered and much grieved choice to let go of life.

While hearing Nagui's dignified responses to the interview questions was profoundly intimate and moving, it was his partner, Jan's, description of her process of letting go that broke my heart and brought tears to my eyes.

I had experienced those same achingly bittersweet moments of shared love and appreciation as our days together counted down. I had wept through the same process of grief and letting go - again and again and yet again - as the time of Derrick's death approached. But I hadn't had to watch as my husband ended his life earlier than necessary because the laws of the land deemed waiting as long as possible, and then being assisted with suicide, a Criminal Code offence. I can't imagine having to walk that journey.      

Whatever your personal feelings about assisted suicide, I hope you will listen to both parts of Jan and Nagui's story. Answers to such complex problems as this are never black and white nor easy to find but listening deeply and responding compassionately to the lived experience of those most closely affected is surely the best place to start.

(You can listen to Nagui's Choice by clicking on the link above and then clicking on the white words, Listen to the Latest Audio. You can also access Dr Brian's blog post on the topic - Nagui's Choice: Dr Brian's Take ).


  

Sunday, September 2, 2012

When Long Term Caregiving Ends V: New Beginnings ...



What the caterpillar thinks
is the end of the world ...
the butterfly knows
is only the beginning.

Anonymous


Welcome to our last post in the series on life after long term caregiving.

You will remember from previous posts that every transition, including that from the caregiving to the post-caregiving life, proceeds in three overlapping phases - the endings phase where we let go of and grieve the old life; the neutral zone where we sit in limbo while reorientation, redefinition and creativity work away beneath the surface to provide possibilities for the future; and, finally, the new beginnings phase where we start to build psychological attachment and commitment to our new lives. Today, we look at the new beginnings.

The start (as opposed to the beginning) of a new period of life is generally concrete and clear - a particular point in time - but a new beginning is a different matter. Beginnings are "internal" and "messy"; they can't be pinpointed by a date on the calendar. Beginnings are gradual and follow the timing of the mind and heart. They will not happen until we have spent sufficient time in the endings and neutral zone phases.

Human beings are ambivalent about beginnings. As Bill Bridges puts it (paraphrased):

Beginnings are strange things. People want them to happen but fear them at the same time. After the long and seemingly pointless wanderings of the neutral zone, most people are greatly relieved to arrive at whatever Promised Land they've been seeking. Yet beginnings are also scary, for they are the time to make a new commitment and actually be the new person that the new situation demands. 
Beginnings feel frightening because they:
1.  reactivate some of the old anxieties that were originally triggered by the endings phase,
2.  represent a risk, (What if it doesn't work out? What if I can't make a new life?)
3. resonate with risky times in the past, (They may trigger old memories of failures.)
4.  may destroy what was for some, a pleasant waiting experience in the neutral zone without any accountability or pressure, or they
5. may re-ignite the grief  of the endings phase. (New beginnings remind us that the old, familiar life really is gone.)

No matter which aspect of the new post-caregiving life you're considering - leisure activity, therapy for healing caregiving-related trauma, new employment, education, creating a healthier lifestyle, volunteering, or developing a new relationship or support system - you will find it easier if you provide yourself with The Six P's of New Beginnings:


1.  Pay attention: New beginnings often emerge as quiet quickenings of interest. Something catches your eye or claims your attention. Pay attention to these nudges and the directions in which they may point you. Reflect on them. Journal. Talk them over with trusted loved ones or with a coach or counsellor. Think about how they might fit together to begin to form the beginning of a new life.   
2.  Purpose:  Allow yourself to reflect upon why you want to create this new life. What is your purpose in engaging it, or this aspect of it? Why does the shape of your new life matter - because your health is failing, because you've given up so much while caregiving, because it's time to focus on yourself, because there other things you want to contribute to the world, because you have a family to care for, because your creativity is reawakening, because you want to make meaning of your caregiving experiences and share them with others ...? Successful beginnings are based on a clear and personally congruent purpose.
3.  Picture:  Purposes are important but they can be rather abstract. Most people need a picture in their minds of what they want their new life look like. (One of the losses of the endings phase of transition is that the old picture of life falls apart and much of the pain of the neutral zone comes from the lack of a picture of how a future life might look.) Allow yourself to dream a picture of how you want the new life to be.
4.  Plan: In order for your picture to morph into reality, you'll need to make a plan. Make it a plan of small, concrete, easily achievable baby steps. If any step feels overwhelming, chunk it down into smaller steps until it feels manageable. Address one aspect of your new life at a time and don't attempt to plan changes in areas where you have no control.
5.  Play your part: Take ownership of and responsibility for your purpose, picture and plan and then take action. Commit to taking each step as it comes, to revising your plan when necessary, and to hanging in until you reach the desired outcome - a healthy, fulfilling, new post-caregiving life.
6. Patience: Be patient with yourself and trust the process. Beginnings take time. There will be stumbling blocks and setbacks and unexpected changes in direction. Know that you will revisit the ending phase's grief and the neutral zone's disorientation and anxiety from time to time as you begin again. This is natural because the three phases overlap. Use these experiences as opportunities to refine new coping skills. Allow yourself to be human and to ask for help when you need it. Healthy new lives are interdependent lives.

As your transition to the post-caregiving life unfolds, be sure to find ways to celebrate each step into the new beginning and the conclusion of this time of transition. Acknowledge your hard work and find a way to symbolize your new stage in life  (buy a special book or a piece of jewellery or pottery or a painting, take a trip or a pilgrimage, train for a run or a climb to symbolize your new strength, plan a ritual to share with loved ones, make a scrapbook or a photo essay or a series of paintings of your transition).

And remember:  

When old words die out on the tongue,
new melodies break forth from the heart;
and where the old tracks are lost,
new territory is revealed with its wonders.

Rabindranath Tagore
Indian philosopher
   


Tuesday, August 28, 2012

When Long Term Caregiving Ends IV: The Neutral Zone ...



It's like being in between trapezes. It's Linus 
when his blanket is in the dryer. 
There's nothing to hold on to.

Marilyn Ferguson



Hi everyone - I'll apologize in advance for another long post. There's just so much to say! (If I ever finish my first book, maybe this should be the second one ...).

Today, we're exploring the neutral zone, the middle stage in the transition between caregiving and post-caregiving. The neutral zone is typically a time of anxiety, worry, insecurity, uncertainty, frustration, low motivation, disorientation and self-doubt. Old issues and concerns, long patched over or compensated for, may rise to the surface. We overreact or react sluggishly, are easily confused and have trouble getting organized to complete necessary tasks.

What is going on? Well, basically, we're in limbo. The life we've known has gone and the new one hasn't yet arrived. Everything seems ambiguous. We have no sense of direction. And this in-between world does not resolve over night. As French novelist, Andre Gide, wrote:
One doesn't discover new lands without consenting to lose sight of the shore for a very long time.
The neutral zone is a difficult time. Former caregivers may struggle with the realities of loneliness, lack of structure in their days, financial depletion, poor health, new technologies, difficulty becoming employed, doubts about purpose and meaning, crises of faith, and continuing grief. However, if we can wait it out, the neutral zone can also be a time of creativity. 

Change and transition expert, Bill Bridges, puts it this way:
The neutral zone isn't just meaningless waiting and confusion - it is a time when a necessary reorientation and redefinition is taking place, and people need to understand that. It is the winter during which the spring's new growth is taking shape. ... The outlook, attitudes, values, self-images, ways of thinking that had been functional in the past have to  "die" before people are ready for life in the present.
So, we need the neutral zone, as uncomfortable as it is. One way to reduce the discomfort is to build some "temporary systems" for coping with the uncertainty and turmoil of this in-between stage:

1.  Coping with loneliness: 
Whether your loneliness is the unremitting, all consuming loneliness of widow(er)hood or the distance and alienation of a relationship altered by long term illness or injury, it is profoundly painful. And rather than reaching out, many former caregivers, too exhausted, too ashamed of their loneliness, or aware that no one will ever replace their lost loved one, withdraw farther and farther into isolation. And that isolation leads to more isolation. (Perversely, the more lonely you feel, the more you may stay alone.)
Even if you don't actually isolate physically, you may find yourself searching for connection in all the wrong places - telling complete strangers about your loved one's illness or death; becoming extremely busy with activities of all kinds; or losing yourself in TV, alcohol, the overuse of prescription drugs, sex, overeating or other compulsive behaviours. What is needed, instead, is the courage and strength to reach out, at your own pace, to people you know you can trust to be with you without trying to "fix" you.
These people may be kind friends who understand the neutral zone experience, caring acquaintances from a grief support or caregiving group, pastoral care or hospice volunteers, or helping professionals like clergy, counsellors or coaches. If your partner has recovered from his or her illness or injury, he or she may be the person with whom you most need to reconnect and share your true feelings and concerns.  Author and psychotherapist, Rachael Freed calls this "re-pairing the heartmate relationship" and writes about it in her book, Heartmates.
Once you have a core support system in place you can use it as a secure base from which to manage the uncertainties of the neutral zone.
2.  Managing stress:
The neutral zone, as you can see, brings its own stressors, different from but just as potent as those encountered during caregiving. Many of the same skills and practices that got you through the caregiving life will be useful again here - centering, regulating your breathing, avoiding worry and catastrophizing, embracing the present moment, appropriate contingency planning, walking and getting aerobic exercise, practicing good self care, journalling - particularly gratitude journalling, practicing taking in the good, and focusing on your daily spiritual practice. 
An excellent small book for practical reminders on how to manage stress is Edmund Bourne's, Coping With Anxiety. And Pema Chodren writes beautifully, from a Buddhist perspective, about becoming Comfortable With Uncertainty.
3.  Doing a life review:
This might also be a time to engage in a life review group, following the guidelines of James Birren's autobiography groups. If there is not a trained facilitator in your area, you could purchase a copy of Where to Go From Here: Discovering Your Own Life's Wisdom in Your Second Fifty and work through it with a coach or therapist. Or you could look for a helping professional willing to read the leaders material and facilitate a group. 
Although the book is aimed at those in the second half of life, I find the questions helpful for adults during any major transition. Provided you have recovered sufficiently, physically, and have the energy and focus to think reasonably clearly, the neutral zone can be a perfect time to take stock of life so far, and and to consider new directions for the future.    

These are just a few ways of structuring the neutral zone to make it more tolerable as you wait for the first whispers of new beginnings to appear. If other things have helped you during a neutral zone, please do take a moment to share them with us.


     
       

Thursday, August 23, 2012

When Long Term Caregiving Ends III: The Endings Phase





All changes, even the most longed for, have their melancholy;
for what we leave behind is part of ourselves;
we must die to one life before we can
enter another.

Anatole France

He that lacks time to mourn, lacks time to mend.

William Shakespeare


Welcome to post number three of the series on life after long term caregiving

The transition from the caregiving world to the post-caregiving world, like all transitions, takes place in three overlapping phases - the endings phase, the neutral zone phase and the beginnings phase. The endings phase is a time of grieving and letting go of both the pre-caregiving and the caregiving world. It involves recognizing the many losses that have taken place and making space for our inner responses to each of those losses. It involves letting go of the way things used to be.

The primary loss in the endings phase is usually the death of the care recipient - child, parent, grandparent, spouse, sibling, extended family member, friend. This is a profound and multifaceted loss that can take years to grieve fully if the attachment has been strong. For many family caregivers, there are also a number of significant secondary losses including:

  • loss of the caregiver identity and associated status
  • loss of the roles and daily routines of caregiving that provided structure for your days
  • loss of the close "community" of healthcare professionals who provided social support then disappeared soon after the death
  • loss of the sense of purpose and meaning that came with providing care
  • loss of life opportunities - education, relationships, travel, time 
  • loss of self confidence in areas of life apart from caregiving
  • loss of a now-familiar "medicalized" environment
  • loss of financial security - earnings, savings, pension contributions
  • loss of employment opportunities - experience, training, promotions, higher level positions
  • loss of health and wellness - physical, emotional, spiritual
  • loss of the unusual closeness and intimacy of the caregiving relationship

Given sufficient social support and the opportunity to recover physically from the exhaustion of providing care, caregivers will begin to grieve these losses automatically in a style congruent with their personality type. The grieving will not likely finish within a year, as many believe - frankly, it will take as long as it takes.

Grief expert, Rabbi Vicki Hollander, reminds us that it is important to face into our grief rather than avoiding it:

It is important to remember you cannot outrun grief. You can delay it, freeze it, push it off. But it will remain with you until you face it and work with it. When you do not attend to it, you can have an increase in physical illness, and your emotions and relationships may be affected. It is far healthier to confront and learn to walk with it.

That said, it is also important that we don't try to tackle all our losses at once, risking becoming overwhelmed. If you are dealing with multiple traumatic losses, it can be a good idea to consult with a grief therapist who will help you to pace and regulate the emotions of your grieving.

Vicki has some further guidelines for those who grieve:

  • Continue to rest when you can - grieving takes a lot of energy and can disrupt sleep.
  • Simplify - continue to attend to rock bottom basics like healthy food, regular exercise, sufficient sleep, keeping afloat financially. This is self-care, not selfishness.
  • Drive very carefully - grief can preoccupy you, making you more prone to accidents for the first year. 
  • Get any answers  you need to questions about your loved one's illness and death.
  • Have patience with yourself - be as kind to yourself as you would be towards a beloved friend. You may have much to learn and new routines to create. The stresses of these changes are great. Sometimes you may need to shut down for a bit in order to cope. This will change. Respect your need to stop.
  • It is natural to feel a little crazy - transition can take us "out of rhythm" with our previous routines and ways of life. If you feel scared about your feelings, check them out to see if you are on target.
  • Refrain from making significant changes  in your life for the first year, if possible. Times of transition and grief do not necessarily lend themselves to good decision-making.
  • Have realistic expectations of the people who support you. Tell them what you need - they cannot read your mind. They may or may not be able to respond. Realize that you may need to find some new sources of support now that caregiving is done.
  • Reduce stressors - keep your gas tank at least 1/4 full; give an extra house key to a trusted neighbour; always put your keys, wallet and phone in the same place when you get home; carry enough change for parking or bus fare; plan all holidays, anniversaries and birthdays well in advance; learn to ask for help when you need it; when accepting invitations, let people know that you want and intend to come but may not be able to manage it at the last minute. Check in advance to see if this will be okay.
  • Complete unfinished business.  If you have unfinished thoughts, feelings or issues that were not expressed or worked through with your loved one and still demand attention, talk them through with trusted friends or see a grief counsellor.
  • Try a facilitated grief support group or seminar.  There can be a tremendous sense of isolation when grieving. It can help to gather with others who share the experience of grief, who know what you're talking about, and who may have tips to share.
  • Try using a journal  to express your thoughts and feelings about your new life without the physical presence of your loved one. It can become a companion for you and help to relieve some of the internal pressure of carrying so much inside. Journaling can also mark your growth, changes, insights and learnings. Later, as you look back, it can show you how far you have come. 

For some, caregiving ends with the recovery of the care recipient. For you, many of the same losses apply. In addition, you face the difficult inner task of relinquishing the reins and returning to the pre-caregiving role of spouse, child, parent, sibling, friend. This can be a tricky process with many opportunities for conflict, particularly if the care recipient does not have insight into remaining deficits or if the caregiver is too frightened and traumatized to let go.

Sometimes your fears are realistic and sometimes they go back to an earlier time when you felt as though you were in danger. Sometimes the fear is a combination of both past and present situations, causing an intensifying or layering effect. Whatever the case, dealing with the fear of letting go and grieving the associated losses can be helped by learning to reduce your fight, flight, freeze response; recognizing that you can never truly "go back" but must create a "new normal"; and accessing the help of a family therapist used to working with the family effects of serious illness or disability.

This has been a long post but hopefully one that leaves you with some workable ideas for moving through the endings phase of the caregiving to post-caregiving transition. Please join us next time as we explore the neutral zone - the middle stage of the transition process.