Resources for Kids Who Are Caregivers ...

Hi everyone - Happy Victoria Day long weekend! I want to start off the weekend with some news about a great new-to-me resource for children and teens who are family caregivers.

I have written in the past about a most vulnerable and invisible population of family caregivers - children who care for a family member who is ill, frail, disabled or addicted. At that time, the only services I could find for their support were those in the United Kingdom's Young Carers programs.

That was until this past Thursday when, I'm delighted to say, I came across a great story on CNN (online) about one of their 2012 CNN Heros, Dr Connie Siskowski, and her organization for child caregivers, the American Association of Caregiving Youth.

According to the Bill and Melinda Gates Foundation, 22% of American dropouts leave school to care for a family member. If family caregiving is stressful for adults, how much more so for those children and teens? With brains still developing and vulnerable to loss and trauma, with constant worries about what's going on at home while they're trying to learn at school, and with all the same physical, emotional and spiritual stressors that affect adult caregivers, it's no wonder that these kids drop out.

Dr Siskowski, a registered nurse in Florida, and once a child caregiver herself, has made it her mission to bring this invisible population to light and has been doing so since 2002.  Through her non-profit organization, and with the help of many partner organizations and community volunteers, Dr Siskowski provides child caregivers with an amazingly comprehensive set of services including:

• In school - skills-building classes, support groups, lunch and learn sessions, and community service hours awarded for time spent caring for a loved one
• At home - linking families with resources, providing computers, tutoring and solutions for special needs
• Out of school - overnight camp, fishing, dining, educational and fun activities 

Here in Canada, where about 12% of high school youth report being young caregivers, we now have the beginnings of a support organization in Young Carers Canada, an outgrowth of the Alzheimer Society of Ontario. This group is working toward registration as a not-for-profit, national organization and has three new projects coming into being in St Catharine's and Toronto, Ontario and in Cowichan, (Vancouver Island), BC **.

It will take some time for these programs to become established and for supports to be developed across the country, so what about trying a small support project, yourself, this weekend? Try making a list of all the adults and children you know who have disabilities, or chronic or life-limiting illnesses. Do any of them have children or teens in their families who might be involved in caregiving? If they do, is there a way that you could help them find a little respite?

Perhaps you could take them on an outing with your kids this weekend, or take in a delicious meal or a movie and fixings for an ice cream sundae, or stay with their loved one so they can have an afternoon off with their friends ...  The possibilities are endless and any one of them could make such a difference to a young person caring for a loved one and growing up too soon.

**  Ending the Silence  is an excellent new video created by the Cowichan project to describe the needs of youth caregivers and how they can be met when the silence is broken. 

Second Compassion Fatigue Conference ...

Just a reminder that the Second Annual Compassion Fatigue Conference will be held in Kingston, Ontario again on June 12 and 13.

This year, the focus will be on organizational health and hands-on wellness strategies, with keynote speakers including Joan Borysenko, a world renown author and psychoneuroimmunologist, who will speak on stress and burnout; Linda Duxbury, professor at the School of Business at Carlton University, Ottawa, whose topic is work-life balance; and humourist, Paul Huschilt who will help you to enjoy humour in the workplace.


Other workshop topics will include:

• mindfulness, 
• working with mandalas, 
• moral distress, 
• resilience, 
• understanding conflict in trauma-informed workplaces, 
• work-life balance, 
• and humour for workplace wellness.

I won't be going to the conference this year, myself, (self care at the cottage has won out over time in town) but I would love to hear how those of you who've attended the two days have enjoyed the experience. Why not leave a comment here on your return to encourage others to attend next year?

So, if you are interested in attending a great Compassion Fatigue Conference in one of my favourite cities in the world, you can go to the conference website for more information and to register.

Regular Sustenance ...

It's a beautiful spring morning - clear, sunny, fresh, and cool. As I walked around the lake in the early hours, I noticed, as I have many times before, that someone had been there ahead of me, dropping a handful of birdseed at regular intervals along the 4x4 rim of the boardwalk. It brought to mind the importance of regular sustenance for anyone who cares for others, whether professionally, personally, or both.

There's an old Sufi saying that goes something like, "We should never give from the depths of our well, only from the overflow." This saying presupposes that our wells are filled to overflowing on a regular basis. And yet, how many of us can say that we have established a regular schedule of refreshment and rejuvenation - one that our bodies and spirits can look forward to and count upon? The little birds travelling from one pile of seeds to the next along the boardwalk know that they can keep moving on to the next handful of seeds. How many of us can say we seek out sustenance with the same regularity?

While one-time treats like vacation trips, retreats, conferences, or celebrations are great and can do much to refuel us, they come, and then they're gone. We all need something more to count on. We need daily nurturing that's planned ahead. (That's not to say that we must do the same thing every day or that we can't make spontaneous choices, but that we do need to plan something rejuvenating for each day of the week.)

I do a lot of once-off refreshers but I also know there are a few indispensables that I need to give myself on a regular basis so I have an "overflow" from which to draw. For me, those indispensables include:

• daily quiet time in the early morning for meditation, prayer, or inspirational reading,
• weekly Wednesday mornings at the bakery with my spirituality study group,
• gratitude journalling every evening,
• almost-daily walks at the lake,
• green smoothies midmorning, midafternoon and evening, and
• playing my guitar for a few minutes every day.

What about you? What are your regular indispensables? If you don't have any, why not try adding one regular refueller to your schedule and notice how it adds to your overflow?

New Information on BC Seniors Care ...

Hi everyone - just a note to let you know that this week, (May 8-11), CBC Radio 1, CBC TV and CBC online are presenting a special series on Big Business in Seniors Care, an investigation into who is profiting, how best to navigate the system and the realities of residential care.

This series should be of interest to anyone with a stake in the care of the aging (-and that should be all of us.). We are all aging, ourselves, and we all know and care about someone who is a "senior". Do take a look at the schedule below to see if you can tune in to one of these special programs or, alternatively, look at the CBC website at www.cbc.ca to catch up on programs you've missed.


Tuesday May 8: The Early Edition - 6:40 am

Business in Vancouver's Joel McKay will join us for a look at the Big Business of seniors care. We'll find out who's winning and who's losing in the push to a profit from a demographic tide.

BC Almanac - 12:30 pm

Margaret MacGregor of the UBC Faculty of Medicine has done research that shows for-profit companies deliver inferior care for seniors. David Hurford of the BC Care Providers Association says for profits serve a crucial role in the system. They'll discuss the  issues and take listener calls on BC Almanac at 12:30.

CBC News Vancouver: 6pm on CHEK and after hockey on CBC Television

The reality of residential care. Who's paying what and the role of private operators in the public system.

Wednesday May 9: The Early Edition - 6:40 am

For Rebecca Maurer the sandwich generation experience came sooner than expected. The Early Edition's Geoff Turner shares her emotional experience in the worlds of public and private seniors care.

CBC News Vancouver: 6pm on CHEK and after hockey on CBC Television

Navigating the system. What is the process when a person needs residential care? How do you choose the best option?

Thursday May 10: The Early Edition - 6:40 am

The system of seniors care can be a nightmare to navigate. But that struggle has produced another business opportunity. Rick Cluff will talk to Barbara Kirby and learn just what a "Certified Professional Consultant on Aging" does for seniors.

CBC News Vancouver: 6 pm on CHEK and after hockey on CBC Television

BC's Ombudsperson has issued hundreds of recommendations to improve the system. What is the government's response?  CBC News Vancouver at 6pm on CHEK Channel 6 and after hockey on CBC television.

Friday May 11: The Early Edition - 7:10 am

All week we've heard about the difficulties of the system of seniors care. On Friday, Rick talks to Health Minister Mike de Jong about what the government is doing to make the system work. We'll get his thoughts on the role of private business in seniors care  and we'll learn how the province is responding to the Ombudsperson's calls to action on senior's issues.  CBC News Vancouver: 6pm on CHEK and after hockey on CBC Television Campuses of care. How to plan for the future so increasing health care needs don't  mean uprooting your life.

To see extended the video and an interactive map of long-term care facilities in the Lower Mainland, go to cbc.ca/bc

Another item of interest to seniors and those who support them is the latest article by Rob Vipond at Victoria, BC's, FocusOnline magazine. (You may recall his previous piece on the use of antipsychotic medication for chemical restraint in the elderly in BC.)

The current article focuses on the provincial Ombudsperson's report, The Best of Care: Getting It Right for Seniors in British Columbia (Part 2), and the need for increased government tracking and public reporting regarding funding and services in a very confusing system, more consistency in who is permitted to provide care, and an up-to-date web portal for displaying basic resources, assistance, and facilities so people can compare options in cost, staff qualifications, and inspection histories.

As Vipond says,

The ombudsperson's report becomes most disturbing as it identifies the severe dearth of legal or professional standards for either staff or facilities, whether public, private or mixed. Reviewing just a fraction of these findings, the report reveals that there are no enforceable standards for staff qualifications or staff numbers in residential care. Care aides receive no standardized training, and in private facilities need 't have criminal or abuse histories checked. There are no legal standards in residential care for bathing frequency, dental care, regularity of assistance with getting to the bathroom, call-bell response times, meal preparation and nutrition, or resident rights to even have visitors let alone informed consent to medications.

Like a rusty ship's hull springing new leaks with every movement, these worrying, eye-opening findings compound upon each other page after page. In assisted living, there are no legally binding standards for staffing, residents rights, food safety and nutrition or emergencies, and residents can be evicted with no notice, without appeal. (Government wrote improvements to these tenancy laws 15 years ago, but hasn't enacted them.) There are no legal quality of care standards for home support services. Extended care hospitals are not subject to routine, independent inspections-most have not been inspected in years - and aren't subject to any legal standards for hygiene, emergency preparedness, nutrition, general living conditions, or administration of medication. (Government developed legislation to correct this 9 years ago, but has not enacted it.)

"I think what is demonstrated here is the result of a number of years of movement from objective regulatory standards to outcomes," says Carter. "So essentially, as currently worded, the standards tend to be things such as, 'You need to have adequate staff. You need to ensure that staff are properly trained.' ... The difficulty is, how do you know when there's inadequate staff and inadequate training? ... Does that mean there should be a registered nurse on, or not?"

In contrast, her report shows a table of the precise, legislated staff qualifications and staff-to-child ratios for daycare centres. "In children's care, it's really clear," she explains. "You say, here are vulnerable children, and we're not going to just say 'adequate'.  We know that there's a certain number of staff that you've got to have. Some seniors in residential care, indeed perhaps a not insignificant percentage, are just as vulnerable." 

In that regard, one finding is particularly haunting: There are no legal requirements for health professionals to report outright abuse or neglect of seniors to anyone. "Again, the example is young children, where there is an obligation," comments Carter. "The people who are providing (seniors care) are dealing with a pre-qualified group who've got physical frailty or cognitive impairment or both, and it makes sense to say you really should be reporting if you think that they're abused and neglected."

To continue reading, go to FocusOnline ...

To find the full ombudsperson's report, go to www.ombudsman.bc.ca.

Much important food for thought ... and, hopefully, for action!


**  Thank you to Kathleen Hamilton at the BC Association of Advocates for Care Reform for keeping me up-to-date with happenings on the residential care front. Their website is worth a look and their cause is worth your support.

Mental Health Check-In and Respite ...

Hi everyone! Just a quick post before I leave for the States for my annual mental health check-in and a few days of relaxation in warmer climes.

When we work in environments that are continuously stressful (at work or at home) and we are frequent witnesses to others' stories of trauma and loss, it is essential to take the time to check in with a skilled observer and supporter who can give us objective feedback regarding our current state of emotional wellness.

Are we carrying a load of accumulated grief or primary or secondary traumatic stress? Are we burned out? Are our stressors affecting important areas of our lives - physical, mental, emotional, spiritual? Are they affecting the quality of our work with the people we're trying to help or with our relationships within our support systems? Are we using the most helpful coping mechanisms? It's a good thing to schedule a regular check-in to be sure.

While I'm away, I'll schedule a couple of mornings with my therapist and then ease into respite activities like reading, resting, walking, perusing the wonderful farmers markets and bookstores, and wandering along the beach. I'll also eat amazing organic fruit and vegies, add a couple of hours to my usual night's sleep, and generally s-l-o-w down. Last year, I wasn't able to make the trip and a couple of Skype visits had to suffice. I'm r-e-a-l-l-y looking forward to stepping off the plane tonight, breathing in some of  the warm, floral air, and feeling my body relax...

Now, some of you are probably thinking, "I could never find the time to do that." And you would be right - you'll never find the time. It's really necessary, in our crazy busy world, to carve it out - to sacrifice where you can for the financial element, to beg favours from family and friends to cover your responsibilities, and, sometimes, to wait longer than you'd like to have the check-in and respite for which your body and soul are yearning.

Why not let yourself consider making a check-in appointment and scheduling some sustained respite today - even if you're working two years in advance as I was. If nothing else, it gives you something to look forward to!

And, on another note - if you are planning to sign up for the Spring compassion fatigue workshops as a way of checking-in, and you haven't yet done so, don't worry - there will be a space for you. Just email me about your intention at caregiverwellness@shaw.ca and I'll send you a registration form as soon as I get back on the 29th.  In the meantime, take care and try to do 1 good thing for yourself today.

My New Favourite ...

So, I have a new "favourite book". It's called Just One Thing: Developing a Buddha Brain One Simple Practice At A Time and it's author is Rick Hanson, PhD, neuropsychologist, affiliate of the Greater Good Science Centre at UC-Berkeley, and cofounder of the Wellspring Institute of Neuroscience and Contemplative Wisdom.

This little book seems to have legs of it's own. It follows me from my bedside table (where I read a bit before I go to sleep), to my stationary bike (where it's actually beaten the latest Charles Todd mystery for pride of place), to the car (just in case I get caught up and have to wait at the railroad crossing), to my spirituality and practice group (where others have agreed with my positive assessment),  to the phone in the living room (where I've quoted it a couple of times to ground and comfort anxious friends).

The text is a compilation of 52 simple practices (mostly internal) divided into five segments:

• Be Good to Yourself
• Enjoy Life As It Is
• Build On Your Strengths
• Engage the World At Work and At Home
• Be At Peace With Your Emotions     

The theory behind each practice is explained in a succinct page or two (or three) and then the "How" section clearly describes "how" to go about the practice.  Included are:

• Taking in the good
• Protecting your brain
• Feeling safer
• Relaxing anxiety about imperfection
• Enjoying your hands
• Taking refuge
• Filling the hole in your heart   

As Rick explains in the introduction, the practices are deceptively simple but the truth is, when practiced regularly over time, they can actually change your brain through a process called
experience-dependent neuroplasticity. 

He goes on to say:

You can do these practices in several ways. First, you could find one particular practice that by itself makes a big difference for you. Second, you can focus on the practices within a section of the book that addresses specific needs, such as part 1 on being good to yourself if you're self-critical, or part 5 on being at peace if you're anxious or irritable. Third, you could move around from practice to practice depending on what strikes your fancy or feels like it would help you the most right now. Fourth, you could take a week for each one of the fifty-two practices here, giving yourself a transformational "year of practice".

However you go about it, I think your life could truly be changed by engaging in some of these practices. I hope you enjoy this wise little book as much as I am!

Self-Compassion - A Step Toward Healing Compassion Fatigue ... ...

For 12 days last month, the city of Vancouver was abuzz with talk of compassion. Why? Because Karen Armstrong was in town.

Invited by Simon Fraser University's, Centre for Dialogue, Karen Armstrong,  2008 TED Prize winner and one of the most provocative current thinkers on the role of religion in the modern world, led 12 days of conversation on compassion and living a compassionate life throughout the city.

Karen's visit marked the launch of the Greater Vancouver Compassion Network, part of an international movement to build compassionate communities, inspired, in part, by her Charter for Compassion, a document supported and endorsed by both Archbishop Desmond Tutu and the Dali Lama.

While not everyone will agree with her "freelance monotheistic" lens, I believe Karen has much to say to those of us who yearn to treat ourselves and others with greater compassion.

In her best selling book, 12 Steps To A Compassionate Life, Karen has written a full chapter on the importance of self-compassion, a quality that I see as an essential part of compassion fatigue healing and resilience. In her words, -

The Golden Rule requires self knowledge; it asks that we use our own feelings as a guide to our behaviour with others. If we treat ourselves harshly, this is the way we are likely to treat other people. So we need to acquire a healthier and more balanced knowledge of our strengths as well as our weaknesses. ... (to) make a list of our good qualities, talents, and achievements. We recognize flaws in our closest friends, but this does not diminish our affection for them. Nor should it affect the way we value ourselves. Before we can make friends with others, we have to make a friend of our own self. Without denying your faults, remember all the people you have helped, the kind things you have done that nobody noticed, and your successes at home and at work. A sense of humour is also important: we should be able to smile wryly but gently at our failings, in the same way as we tease a friend.

Another self-compassion writer and researcher, Kristin Neff, of the University of Texas (Austin), defines self compassion as, "... acting the same way toward yourself when you are having a difficult time, fail, or notice something you don't like about yourself, as you would toward a friend". She describes this experience of self-compassion in a threefold manner -

• first, you notice that you are suffering, 

• second, you feel moved by that suffering in a way that leads to warmth, caring, and the desire to help yourself through understanding and kindness rather than judging yourself harshly, 

• and, third, you recognize that your suffering, failure and imperfection is a part of the shared human experience.

She goes on to say:

Instead of just ignoring your pain with a "stiff upper lip" mentality, you stop to tell yourself, "This is really difficult right now. How can I comfort and care for myself in this moment?"

Instead of judging and criticizing yourself mercilessly for various inadequacies or shortcomings, self-compassion means you are kind and understanding when confronted with personal failings - after all, who ever said you were supposed to be perfect? You may try to change in ways that allow you to be more healthy and happy, but this is done because you care about yourself, not because you are worthless or unacceptable as you are. 

Perhaps most importantly, having compassion for yourself means that you honour and accept your humanness. Things will not always go the way you want them to. You will encounter frustrations, losses will occur, you will make mistakes, bump up against your limitations, fall short of your ideals. This is the human condition, a reality shared by all of us. The more you open your heart to this reality instead of fighting against it constantly, the more you will be able to feel compassion for yourself and all your fellow humans in the experience of life.

On Kristin's website there is a Self-Compassion Inventory that you might like to try. Again, remember to be kind to yourself regardless your findings. Low self-compassion is not a personal flaw but the result of many factors including your genetic background, your parenting, your education, your religious teaching, your culture, and your multigenerational history of trauma and loss.

Once you recognize a low level of self-compassion, (and, thus, an increased risk for compassion fatigue), there is much you can do to increase your kindness toward yourself. Karen Armstrong puts it this way:

But before you are ready to "embrace the whole world", you must focus on yourself. Begin by drawing on the warmth of friendship (maitri) that you know exists potentially in your mind and direct it to yourself. Notice how much peace, happiness, and benevolence you possess already. Make yourself aware of how much you need and long for loving friendship. Next, become conscious of your anger, fear, and anxiety. Look deeply into the seeds of rage within yourself. Bring to mind some of your past suffering. You long to be free of this pain, so try gently to put aside your current irritations, frustrations, and worries and feel compassion (karuna) for your conflicted, struggling self. Then bring your capacity for joy (midita) to the surface and take conscious pleasure in things we all tend to take for granted: good health, family, friends, work, and life's tiny pleasures. Finally, look at yourself with upeksha ("evenmindedness", nonattachment). You are not unique. You have failings, but so does everybody else. You also have talents, and, like every other being on the planet, you deserve compassion, joy, and friendship.

The process Karen describes here could take some time and is probably best done slowly with the companioning of a trusted therapist, coach, spiritual director or clergyperson.  If you would like some exercises to guide your exploration, you will find some on Kristin's website.