Financial Strain on Family Caregivers ...

A new poll published by the Canadian Cancer Society this month says that 88% of the 2,231 polled thought that providing care or assistance for a family member would have a negative impact on their financial situation. 57% said that it would have a major impact.

Those of us who have lived the experience might be excused for giving a hollow laugh. Could anything be more self evident? Between lost income, depleted savings, extra expenses not covered by the basic medical plan and money spent on counsellors and respite care in order to stay sane while caregiving, many families will never recuperate their financial losses. This is particularly true of families who face a lifetime of caring for an seriously ill or injured child.

Few of us would give up the opportunity to care for an ill or disabled loved one, but many would be grateful for some compensation for our losses. Family caregivers save our governments millions of healthcare dollars annually at great cost to themselves and their families. According to Statistics Canada, in 2009, the economic contribution of family caregivers in Canada was estimated to be between $25-26 billion and 65% of households with a caregiver report a combined income of less than $45,ooo. (23% reported less than $20,000!).

With an aging population and a federal election in the offing, it behooves each of us to ask pointed questions of our political parties regarding how they would increase government financial support for family caregivers.

The Cancer Society, like many advocacy organizations, has been pushing for better financial support through the federal Compassionate Care Benefit, asking for improvements including:

* Increasing the benefit period from the current 6 weeks to 26 weeks, accessible during a 52 week period.

* Increasing flexibility through allowing benefit claims for partial weeks taken over a longer period rather than blocks of weeks at a time.

* Changing the wording of the eligibility criteria from "significant risk of death" to "significant need of caregiving due to a life threatening illness".

* Amending the Canadian Labour Code to protect the jobs of caregivers.

Special provision also needs to be made for increasing support to family caregivers who are self-employed. Benefits attached to tax credits are of little use to someone who can no longer earn an income due to their caregiving.

It is said that societies are judged by the degree to which they support their most vulnerable. Most family caregivers provide generous and unstinting care for their loved ones. Can we do any less for them?

Please take a moment to call or email your local MP's office to register your concern for family caregivers and to ask what his or her party plans to do, specifically, to support them.

Photo by Bigstock Photos

A Great Nutrition Resource ...

Last Saturday, I went with my sister and her freezing cold grandson, (what is it about preteen boys and their aversion to coats??), to my first Winter Farmer's Market of the season. Up to this point I'd been eating the fruits of the autumn harvest from my own garden but pickings were getting slim so off to the Market I went with family and half a dozen cloth Market bags.

I came home with red kabosha squash, onions, potatoes, kale, carrots, apples and portabella mushrooms and, inspired by the sight and smell of all those wonderful fruits and vegetables, I've taken the time to cook and eat very well this week. (And when I eat well, I have more energy to put into my exercise routine so I've also enjoyed two yoga sessions and great daily walks at the Lake in the spring sunshine.)

There's no question that a healthy diet and good exercise are at the foundation of good physical and mental health, (to say nothing of being an important part of initial recovery from compassion fatigue), but amid all the marketing hype, how can we be sure that we're making the best nutrition choices?

One great resource I like to use as a guide is the Canadian Nutrition Action Healthletter

published by the Center for Science in the Public Interest. The Center is an independent non-profit consumer health group that advocates honest food labeling and advertising, safer and more nutritious foods, and pro-health alcohol policies. They accept no government or industry funding and are thus able to critique food products and policies honestly.

The Healthletter, which is celebrating it's 40th anniversary this issue, is a colourful, sixteen page magazine that arrives in my mailbox ten times a year full of good nutrition research, Canadian name-brand product evaluation, recipes and tips for healthy eating. It is a quick read and provides huge bang for the buck.

Some of this month's articles include:

* Unexpected: Surprise (Nutrition Research) Findings From the Last 40 Years

* Magnesium & Sudden Death

* Don't Just Walk

* Beyond Bread: Think Thin (Brand-Name Ratings of Thins, English Muffins, Bagels etc)

* Under Wraps: Healthy Fillings for Sandwiches

* Artery Crusts: An Evaluation of Brand-Name Pie Crusts

If you are interested in creating a healthier life style, why not take a look and see if the Healthletter might provide the information and motivation to help you on your way?

A New Project ...

I'm delighted to have been asked to participate in a new project of Pacific Lutheran University's MediaLab . This award-winning group, based in Washington State, is producing a full length documentary on Compassion Fatigue which is due to premiere in the fall of 2011.

The new film is designed to give a broad look at how first responders, other front line workers, volunteers, family caregivers, and even those who support disaster response organizations financially can become overwhelmed and rendered impotent by their knowledge of others' suffering. It will define CF, discuss it's effects on helpers and their families, and explore strategies for prevention, recovery and resilience.

We are fortunate to have such a skilled group of students taking on the task of raising public awareness regarding compassion fatigue. It will also be wonderful to have this new film as another tool in our CF toolkits.

Other films by the MediaLab group include "Illicit Exchanges", a documentary about the influence of drugs and guns in North America and "Point of Entry", a film which explored immigration in the US and Canada. These films have won numerous national awards including college division Emmy nominations.

86 Self Care Ideas...

Here are the top self care ideas from a great group of 60 social workers, mental health professionals and family caregiver supporters at today's Compassion Fatigue workshop.

1. Working out at the gym

2. Running with the dog

3. Cooking tasty, healthy food

4. Aromatherapy

5. Small gestures of giving to others

6. Doing nothing

7. Silence

8. Yoga

9. Singing

10. Massage

11. Listening to, and playing music

12. Watching a feel-good movie

13. Morning meditation

14. A bath with candles and music

15. Being in a library

16. Buy yourself flowers

17. Window shopping

18. Gardening

19. Playing

20. Spending time outdoors

21. Journal writing

22. Reading a good book

23. Accepting and honouring your feelings

24. Knitting and crocheting

25. Enjoying your first sip of morning coffee or tea

26. Chatting with a friend

27. Cleaning house

28. Baking

29. Aerobic exercise - biking, cross country skiing, swimming

30. Staying calm

31. Sitting by the fire

32. Living with intention

33. Good dental hygiene

34. Regular health checkups

35. Gratitude journal

36. Last thing at night - identifying the nicest thing that's happened that day

37. Leaving the computer off

38. Avoiding the newscast

39. Laughing and having fun

40. Inspirational reading

41. Being mindfully aware/in the moment

42. Regular meditation

43. Connect with your spiritual side

44. Dancing

45. Craft work

46. Create a support network

47. Eat cookies

48. Prayer

49. Storytelling

50. Travelling and planning it before hand

51. Purposefully doing superficial things

52. Stand-up comedy, sharing a joke

53. Quilting

54. Grouse Grind

55. Candlelight

56. Cooking when not under pressure

57. Being alone and contemplative

58. Going for a sauna

59. Pedicure/manicure

60. Sex

61. Having a facial

62. Debriefing with colleagues

63. Validating yourself to yourself and to colleagues

64. Attending workshops

65. Staying in your dressing gown all am when on a day off

66. Dancing in my kitchen

67. Buying only good wine

68. Long walks on the beach

69. Hikes in the woods with the dog

70. Making photocards

71. Kayaking and sailing

72. Playing a musical instrument

73. Landscaping

74. Sleeping in

75. Pet's unconditional love

76. Driving and road trips

77. Walking to and from work

78. Sitting in a sidewalk cafe, drinking a latte

79. Pausing to breathe

80. Time with your grandchildren

81. Stomping in rain puddles or piles of leaves

82. Validating your colleagues

83. Walking in the grass in bare feet

84. Looking at clouds

85. Letting the warmth of the sun soak into your back or your face

86. Eating chocolate

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.