Resource for Kids...

Serious compassion fatigue, like other forms of posttraumatic stress and burnout, has a ripple effect on the sufferer's circle of family and friends. Some children are particularly sensitive to this CF fallout.

PTS specialist, Aphrodite Matsakis, (1996), describes the impact this way:

"... the major problems experienced by children in homes

afflicted by PTSD are emotional. If ... PTSD expresses itself

in irritability, outbursts of temper, frequent flashbacks or erratic

behaviour, the children are often frightened and anxious,

not knowing what to expect next."

Children can also grieve as the result of a CF parent's distancing and emotional numbing.

And, while many spouses of compassion fatigued helpers are highly effective parents, some say that they can become so focused upon, and depleted by, their partner's pain that they are less emotionally available to their children than they would like to be.

A result of this stress and distress is that children may cope by suppressing their own feelings, believing that no one will listen or that their emotional responses will make things worse.

One way to counter this kind of reaction is to provide children with information about their feelings and about their wider safety net of helpers. There have been several good children's books written about feelings over the years, but this week I came across a great British website designed for children aged 7 - 10.

The website, www.camsden.co.uk, was set up by Tavistock & Portman NHS Foundation Trust, a mental health trust based in Camden, North London. Here, Cam and his team of sock puppet friends, each named for a different feeling - Happy, Sad, Calm, Confused, Angry, & Sad -, read stories and talk about feelings, learn a feelings song, explore common emotion-laden problems and learn to make their own sock puppet with whom they can share their feelings.

While not specifically focused upon CF or PTS affected families, Cam's Den leaves children with the message that there is always someone available to listen and to help with difficult feelings and problems. (In this case, the NHS mental health clinics, so parents here would have to provide alternate information for their area or country.)

There is also a section for parents, explaining how to recognize emotional problems in their children and when to seek help.

Annabel Venning, a journalist who reviewed the site for one of the British newspapers, reported that her children, aged seven and five, "... were immediately captivated by the puppets while the stories were a great springboard for discussion. After one, about a new girl who is ostracised at school, both vowed to make sure that no one got left out at playtime in the future."

Why not take a look and see if it would be helpful for your kids?

A Problem of Privacy ...

Have you ever been frustrated by your inability to give (as a helping professional) or receive (as a family caregiver) patient information needed to enhance family caregiving? It is becoming a more frequent problem as family caregivers are asked to take on more responsibility for ill or disabled loved ones at home.

In a 2010 Nursing Ethics article entitled, Information Disclosure to Family Caregivers: Applying Thiroux's Framework, John Rowe of Open University, UK, makes an arguement for " ... seeking a re-balance so that more consideration is given to the rights of caregivers as they are faced with taxing responsibilities". He does not advocate giving open access to patient information but does suggest that we begin to see "the patient" as the family unit and provide family caregivers with information that will directly affect their lives.

Mr Rowe describes the information-sharing problem thus:

Willingness to share information is central to an effective relationship between practitioners and family caregivers. Active and informed involvement of family caregivers can be vital to recovery, even where there is conflict between the needs and wishes of service users and those of their caregivers. For example, a service user's care plan may stipulate attendance at a day centre to take part in occupational or recreational activities and foster community participation. The caregiver is often required to urge attendance, especially when the service user lacks drive and motivation, and believes that he or she already engages in purposeful activities outside the social care system. The caregiver may use this "free" time to shop or see friends and so gain a secondary benefit from the service user's attendance at the day centre. At a day centre review meeting in the absence of the caregiver, the service user's wish to stop attending may be agreed. In this situation the desires and wishes of the service user and those of the caregiver are in conflict.

In the circumstances given above it is central to the service user's recovery plan to attend a day centre, but the service user would not do so without the active urging of the caregiver. The caregiver therefore has a pivotal role in the service user's recovery, but not it seems in the decision-making process. Rethink, a mental health charity and campaigning organization, reported that many practitioners use the principle of confidentiality to block sharing of information, thereby excluding caregivers from care planning and other discussions, with the relationship between caregivers and professionals being the actual root of the problem.

Many caregivers subsequently feel unsupported and excluded from decision making. "Confidentiality smokescreens" thus make things worse: practitioners find it easier and safer to say nothing, and do not take into account caregivers' rights to basic information to enable them to fulfill their caring role. This makes matters worse for caregivers because they are prevented from understanding mental health issues and how to deal with the challenges they encounter and, frequently, service users also suffer.

After using Thiroux's Ethical Framework to provide guidance for practitioners facing these confidentiality problems, Mr Rowe concludes with these words:

An ethical case for disclosure would have to include the nurse as part of the relationship triangle, with the nurse committed to engagement while seeking what is a good outcome. This draws into question the role of the nurse: whether the nurse is for the service user, or for the care context as a whole, with the context including all the major players in practice situations. This latter approach would contradict the accumulated legal and professional rules that still focus heavily on respecting patient autonomy and the rights

of confidentiality.

There needs to be a reappraisal of the rights to confidentiality in situations where one person's rights are supported and upheld at the expense of the rights of others, especially for those who provide significant support to enable a cared for person to have a better life.

Better guidance on when to breach confidentiality that recognizes the level of dependency and the relationship between caregivers and service users is needed. This guidance should acknowledge the ethical imperatives for a specific course of action, taking into account what is good in any particular situation to complement guidance on what is bound by law, professional codes and health care obligations. Nurses should be guided to look for what matters, not what is prescribed.

That helping professionals are looking into the impact of withheld information upon the stress level of family caregivers is encouraging and may contribute to a lessening of vulnerability to compassion fatigue in both groups - by reducing moral distress on the part of helping professionals and by lessening the experience of helplessness in family caregivers.

A Happy and Hope-filled New Year ...

There is no medicine like hope,

no incentive so great,

no tonic so powerful

as expectation of

something tomorrow.

Orison Swett Marden

A Happy and Hope-filled New Year to each one of you who supports or cares for others, be they patients, clients or loved ones.

Hope is one of the great gifts of a new year. The unwritten days spread out before us - wide open, filled with opportunities and possibilities.

Sadly, the stress of caring for others can diminish hope in many helping professionals and family caregivers. In a 1999 article published by "Health Care for the Homeless Clinicians Network", called Coping With Stress: Creating and Maintaining Hope, ten clinicians working with the homeless from different parts of the US were asked what internal and external sources of hope and inspiration gave their work meaning and how they sustain and renew hope in themselves and others. Here are a few of their answers:

Sources of Hope:

1. Self Knowledge: Knowing, trusting and depending upon your personal strengths.

2. Belief Systems:

- Religious - belief in doing the work through, and sustained by, a Higher Power.

- Philosophical - belief in a philosophy of compassion or The Golden Rule.

- Theoretical - belief in a solution-based, harm reduction model of care.

3. Care Recipients:

The inspiration that comes from the recipient's resilience, creative responses to challenges and appreciation of even the most minimal help.

4. Colleagues:

Colleagues' commitment, empathy, support and lack of condemnation.

5. Mentors & Role Models:

Both the desire to model the values of a beloved mentor and the hope to be a good mentor oneself.

6. Family History:

Working to help people overcome challenges experienced by our own families.

Sustaining & Renewing Hope:

1. Balancing work with personal time:

- "You can't give all the time and stay emotionally healthy."

- "You need time with younger people. They're the ones who renew my hope."

2. Seeking a broader perspective:

- Learning new things, trying new aspects of the work.

- Connecting with others doing similar work at a regional or national level.

- Travelling to other areas to see how they are approaching the work.

3. Taking time out to reduce stress:

- Exercising 30 minutes / day at something you really enjoy.

- Daily meditation or centering prayer, often during your mid-day break.

- Spending time in nature and noticing the endless hope & renewal of the seasons.

4. Having faith that you are making a difference:

- Becoming more philosophical about the work. Taking sustenance from beliefs like the old Chinese proverb that says, "A drop of water, very small and very soft, falling in the same place can make a hole in a rock that is very large and very hard." Or like Mother Theresa's belief that, "God has not called me to be succsessful. He has called me to be faithful." Or like the guidance at the core of Niebuhr's Serenity Prayer - to change what you can, to let go of what you can't, and to be wise enough to know the difference.

5. Focusing on the "small" positives:

- Listening with respect, touching the "untouchable", offering the basics of warmth, presence, focused attention.

- Celebrating and highlighting the baby steps forward with affirmations and creative rituals.

6. Reading inspirational materials:

- Pieces like Desiderata, Native American Prayer, or Water Balloon Fight or stories from your own favourite inspirational writers.

Now, for those of you family caregivers who face new losses every day, the notion of hope can be a distant and painful one at best. For you, I share again what I learned through years of caring for my husband - that the way to maintain the experience of hope, with its sense of destination and its fuel for continuing the journey, is to be willing to change what it is that we hope for.

With each loss we must grieve then reorient ourselves to a new, and often smaller hope - one more remission, one more vacation, one more Christmas dinner, one more night without pain. This can seem a poor substitute for the kind of hope we used to experience but it is still hope and it will carry us through the tough times much better than having no hope at all.

So, for all of you, may 2011 be a year of hope with all the strength and energy that hope can provide.

Holiday Greetings ...

I am, like many of the rest of you, up to my ears in holiday preparations. The tree is up, likewise the Dickens Christmas Village. My favourite carols fill the air. I have thought about doing some baking, but that's about as far as that's gone!

Next week, I will make my annual trip to Nanaimo, on Vancouver Island, with my car filled with gifts for family and friends and my heart filled with the anticipation of happy hours spent in the warm love and laughter of dear ones. I will be away until December 28th so won't be posting again until the New Year.

In the meantime, I wish you the blessings of peace, joy, healing and comfort this holiday season and leave you with these words from Grace Cathedral, San Francisco, found in this year's Callanish Society Christmas card:

We give thanks for places of simplicity and peace.

May we find such places in ourselves.

We give thanks for places of freedom and beauty.

May we find such places in ourselves.

We give thanks for places of refuge and love.

May we find such places in ourselves.

May we begin to mend the outer world

According to the truth of our inner life.

Self Care Books for the Holidays ...

Yesterday morning, I spent a few hours looking through books at a friend's bookshop in Vancouver. I was looking for Christmas presents and for some new books that I could recommend to you in today's blog post - and I have to say, I struck it rich. Here are three of the books that topped my list:

1. A Life of Being, Having, and Doing Enough by Wayne Muller (2010)

In this sequel to Sabbath: Finding Rest, Renewal & Delight in Our Daily Lives, Wayne Muller, founder of Bread for the Journey, a nonprofit organization that supports community organizing, explores the notion of sufficiency - not "the cramping fear of scarcity, the bloated saturation of over-abundance, but the gentle, effortless release of easy sufficiency".

He addresses the difficulty we have taking a Sabbath, slowing down, or stopping for replenishment and renewal - the difficulty of allowing our work to feel sufficient for the day. He challenges us to listen to our inner thermostats for signs that we have done enough, signs that it is time to take a break or stop altogether.

Wayne, a heart attack survivor who must now live within the limits of his energy, identifies obstacles to living a life of enough - our to-do lists, the fantasy of getting caught up, our inability to slow down or to handle silence and stillness, our harsh self-judgement and our addiction to endless self-improvement and progress.

He also describes the blessings on the road to a life of enough - the ability to see the value in small things, to have mercy upon ourselves, to see the growth that can emerge from loss, to enjoy the benefits of good company, to recognize the sufficiency of presence, and to see the value of bearing witness.

2. In An Unspoken Voice: How the Body Releases Trauma and Restores Goodness by Peter Levine (2010)

In this book, American medical biophysicist and psychologist, Peter Levine, shares the essence and underpinnings of his life's work - Somatic Experiencing - a type of body psychotherapy used for healing psychological trauma.

In a style that reads like a mystery novel, Peter clearly and descriptively explains that trauma resides in the "unspoken voices" of our bodies. Using animal ethology (the study of animals in their natural environments), brain research, native healing practices and his lengthy clinical experience, he shows how traumatic experiences result in psychological injuries that can be transformed by paying attention to the natural healing processes deep within our bodies.

In chapters entitled, The Power of an Unspoken Voice, The Changing Face of Trauma, Immobilized by Fear: Lessons Learned from Animals, From Paralysis to Transformation, A Map for Therapy, The Body as Storyteller, and Body, Emotion & Spirituality: Restoring Goodness, Peter leads us through a body-based healing process that acknowledges our frozen trauma responses and safely paces our developing awareness and mastery of our physical sensations and feelings. He teaches us to self regulate and to allow for the completion of survival responses that were inadvertently cut short at the time of the trauma.

The integration of body psychotherapy and "talk therapy" is the new frontier in trauma work and, in my opinion, there couldn't be a better introduction to it than this visionary book.

3. Haiku Mind: 108 Poems to Create Awareness & Open Your Heart by Patricia Donegan (2008)

Patricia Donegan, poet, translator, and promoter of haiku as an awareness practice, has written this lovely commentary on the haiku of many poets, including herself.

She begins the introduction with a haiku by Shiki Masaoka, -

Cutting a pear

sweet drops drip

from the knife

and says-

I wanted to write this book to share the idea of "haiku mind" -

a simple yet profound way of seeing our everyday world and living our lives

with the awareness of the moment expressed in haiku -

and to therefore hopefully inspire others to live with more

clarity, compassion and peace.

A fine haiku presents a crystalline moment of heightened awareness

in simple imagery ... However, this moment is more than

a reflection of our day-to-day life - it is a deep reminder

for us to pause and to be present to the details of the everyday.

Patricia goes on to share 108 haiku, each with a brief commentary and a short biographical note about the poet who had written it. A lovely read with which to begin or end the day or with which to enjoy a restful cup of tea.

I hope you will enjoy some of these books over the holidays and that you will feel free to add to the list any others you think your fellow caregivers/carepartners might like to read.

Holiday Help for Family Caregivers ...

Family caregivers spend endless time and energy caring for loved ones who are ill, disabled or frail and are often unable to participate in the usual traditions and activities of the season. Thoughtful assistance and gifts from those who love them can make all the difference to the quality of their holidays.

Here are some ways you can help the family caregivers in your life:

1. Ask what's needed or wanted before you shop, bake or make plans. Every caregiving situation is different and the needs of each caregiver are different as well. I remember receiving several lovely packets of bath salts and oils one Christmas while caring for my husband. They would have been wonderful to use had we had a bathtub!

2. Consider that while the gift of an afternoon's concert, play or special event might be much appreciated, it needs to come with the second gift of someone qualified to stay with the care recipient so the ticket can be used.

3. Gifts of food can bring real relief from the monotony and fatigue of cooking, but remember to ask, first, regarding personal preferences, allergies and dietary restrictions. We frequently passed on to others casseroles whose salt content was too high for my husband to eat. (Including a copy of the recipe can help to reduce anxiety in this regard.)

4. Try to avoid gifts that need assembling, that are outside the caregiver's previous experience or that are very complicated (technological devices with multiple functions) unless the caregiver has asked for it, specifically. (Impaired cognitive function is a hallmark of caregiver stress and most caregivers find it hard enough to remember where they put their keys , let alone how a new device works.)

5. Avoid giving anything that will need special care - this includes anything from a delicate plant to "a nice pet to keep you company". Now is not the time to inadvertently add to the caregiver's burden.

6. Consider safety in all gift giving. eg No glass figurines, knife sets, or barbecue lighters for caregivers of children with aggressive or impulsive behavioural disorders, unless there is safe storage space that is out of sight.

7. Consult with the caregiver before buying gifts of perfume or other scented materials that might aggravate allergies or respiratory conditions. (Their own or that of the care recipient.)

8. Consider gifts of your time and presence - "gift certificates" for mowing the lawn or shovelling the walks on a regular basis or for sitting with the care recipient so the caregiver can get out for errands or respite, or for short biweekly or monthly visits for a chat and support. (But be sure that you can follow through with whatever you promise.)

9. Offer to buy and put up the Christmas tree or other decorations - but be sensitive to the loss involved in changing a holiday tradition. Check at each stage in the process to see if that step is something that the caregiver would rather do alone. Perhaps you could buy and set up the tree and lights and then leave the decorating to them or perhaps they will want you to do the whole job. Just keep asking.

10. Offer transportation to shopping malls or to doctors appointments. Return library books or DVD's.

11. Offer to do the caregiver's holiday shopping or wrapping or to help them to navigate shopping on the internet.

12. Talk about plans for holiday dinners well in advance. But be prepared to change plans at the last moment if the care recipient is ill or the caregiver is too tired. Ask what will make life easiest for the caregiver - to have you make and deliver a meal on plates then leave, to eat altogether at your house or theirs, to have a pot luck or share the cooking, to go out for a meal?

13. If you're "going home for Christmas", ask if it would be easier if you stayed in a nearby hotel.

These are just a few possibilities. Please add your own ideas to the list. The important thing is to be thoughtful, empathic and accepting in the face of the caregiver's stress, indecisiveness and desire to hold on to the things that have meant the most to them.

Remembering ...

Every year on November 11th, sometimes in clear brilliant sunshine, sometimes in blustering winds and sheets of rain, we gather around cenotaphs across the country to honour and show our gratitude to those who have given their lives or their health for our safety. Those who have come home injured, whether with physical wounds or operational stress injuries, have come back with their lives changed forever and their altered lives alter the lives of all who love them, particularly their family caregivers/ carepartners.

These family caregivers are as affected by their loved ones' injuries as their loved ones are themselves. No area of their lives is untouched. And yet, all too frequently, family caregivers are the unsung heros of our wars and peacekeeping missions. They are the glue holding families together during long or repeated deployments and once their partners are injured, they take on a myriad of additional responsibilities as nurses, rehab specialists, psychotherapists, cheerleaders and advocates. It is through their support and daily efforts that the members of our military have as much as they do, in order to recover.

And yet, this support for recovery comes at a cost. Energy and resources that would otherwise have been spent nurturing the growth and development of family life must be diverted to recovery from injuries and, worse, to fighting a bureaucracy that seems to have little access to common sense, empathy or compassion. Already overwhelmed by the enormity of the task of recovery and adjustment, veterans and their family carepartners can face an unwieldy, inefficient and seemingly uncaring response to even their simplest requests.

This week, however, a wide ranging group of deeply caring Canadians, led by the vision and efforts of people like Allan De Genova, took a giant step toward supporting our wounded veterans and other first responders and their families with the opening of Honour House in New Westminster, BC.

Set on a quiet street not far from the New Westminster Armoury and the beautiful Japanese Gardens where I played as a child, Honour House is a fully accessible residence that will temporarily house up to ten families who must relocate to Greater Vancouver for a loved one's treatment and rehabilitation and who, in the past, would have endured long separations at a time when they needed each other most.

The ability to stay together as a family unit during long months of recovery will make all the difference to the quality of that recovery for the whole family. Hopefully Honour House is just the first of at least ten provincial houses that will support these families who have given so much for us. And, hopefully, the federal government will come to understand the importance of such support and add federal funding to the mix for the houses yet to come.