Monday, September 29, 2008

Glow 2008 ...

Christmas in September??  No, not exactly.  I have chosen this picture of Christmas lights as a reminder to all of us of the Alzheimer Society's Glow 2008 celebration.  (I have to admit that I had forgotten about it completely until searching their website for other information last week, hence the late reminder.)

Started by two Canadian women, one from the East and one from Vancouver, this celebration acknowledges, supports and increases the visibility of  family caregivers and their thousands of hours of unpaid but crucial care of loved ones with dementia.    

This is the way it works.  On Wednesday, October 1st, you place one string of Christmas lights in a prominent place and turn them on at 8 pm as a sign of affirmation and support for family caregivers.  Then you can log on to and sign the guest book.  As word of this celebration spreads from family to family and friend to friend, the glow is spreading around the world.  I understand from the website that the UN will be acknowledging the Glow in some way this year.

I remember driving home after dark a few years ago and wondering why a number of people in my neighbourhood had put their lights up so early.  Now I know and I will be hanging my string of lights in honour of my friend, Janet, and all the other caregivers who pay such a large price to bring dignity and quality of life to their loved ones.

Please join me in spreading the glow ...   

Sunday, September 21, 2008


There is great, if sometimes subtle, power in the words we choose when we communicate.  This was brought home to me last spring when I attended a Compassion Fatigue workshop in Toronto.

I had been aware, for some time, of a grass roots movement among family caregivers to refer to themselves as carepartners rather than caregivers. The distinction is an important one.  It reminds us that, whenever possible, the care recipient should hold his or her own reins.  The locus of control belongs there, not with us. We who provide support and care, family or professional, are partners who need not and should not carry the reins for those who are capable of doing so themselves. (Not an easy task when a patient or client chooses a treatment plan with which we disagree  or when a loved one wants to get dressed on his or her own and the HandiDart is already waiting at the door!).

The care recipient's locus of control is not the only important consideration in using the term, carepartner.  Toward the end of the Compassion Fatigue workshop in Toronto, during a discussion of factors that build resilience to burnout and compassion fatigue, I mentioned the carepartner-caregiver distinction and wondered out loud whether changing the term would make as much difference to professionals as it does to family carepartners.   I noted that, for me, caregiver  elicits a physiological stress response whereas carepartner elicits a relaxation response. Others tried out their own reactions and agreed.  They found a lightness and relief in the word, carepartner, that wasn't there when they referred to themselves as caregivers. ("I'm just a partner.  I don't have to do and be everything.").

Try it out for yourself.  To begin with, you will probably find that the word feels awkward in your mouth and in your ears but its implicit idea of shared responsibility may give you some relief and some distance from what, at times, can seem like an overwhelming burden.

For myself, I will continue to use caregiver in the blog title so people can find it easily but I will now begin to use carepartner in the blog posts themselves.  Let me know what you think about this small, but perhaps, powerful, change in language.  



Sunday, September 14, 2008

Help ...

In real estate sales, the most important factor for success is said to be, "Location, location, location".  In caregiving -  family or professional - the important factor is, "Help, help, help".

No one can care for others, long term and healthfully, without asking for help, at least on occasion.  But we individualistic, independent North Americans are not always comfortable with asking.  We tend to idealize self sufficiency and it takes most of us a long time to realize that interdependence rather than independence is the true ideal.

But what is interdependence, exactly?  American author, Peggy Collins, says it is, "A place where we're not trying to do it all ourselves, nor are we relying on others to do it all for us." It is a place of balance at the center of the seesaw between self reliance and healthy adult dependence.  It is a flexible position where we can move toward self sufficiency or dependence, given our needs and abilities at the time.

What Peggy is saying is that it is alright to ask for help when you need it - more than alright! Assessing our needs and asking for appropriate help goes a long way toward reducing work stress and building resilience to burnout and compassion fatigue - if we ask for it early enough.

We all have different strengths, limitations and situations and each of us will need different sorts of help at different times.  Whether I am a nurse with 30 patients to settle for the night, a physician who needs a break from call, a therapist who needs a different caseload, or a priest in need of two days off a week, I must ask for the help I need.  Most of us will be surprised to find what a positive response there can be to a direct appeal.

As a young nurse working in a coronary intensive care unit and balancing the needs of a dying father and a seriously ill 2 year old nephew, I didn't ask for help and I had my first encounter with compassion fatigue.  Years later, as a therapist and a family caregiver for my husband, I did ask but I waited too long and met with compassion fatigue a second time. (Some of us take a while to learn life's lessons!).

Now, I have learned to, "Ask soon and ask big.".  The experience of family caregiving has taught me that I cannot always go it alone, and that if I "draw my circle wide" when asking for help, the help will be there.  For me, drawing the circle wide meant contacting people from all areas of our lives - friends, family, acquaintances - and asking them to sign up for either a Wednesday or a Saturday morning so I could get away from home to do errands and to have a rest.  What a profound difference that asking made in all our lives.  My husband's bed bound world expanded through the presence of others.  I could look forward to regular periods of respite.  And those who came to help left with a profound feeling of fulfillment and satisfaction. A win-win-win situation.

So, this week, if you need help at work or at home dare to ask for it.  Start small if asking makes you feel anxious, vulnerable or out of control, but ask, and see what a difference it can make to your life.   


Sunday, September 7, 2008


Today is one of those brilliant autumn days that make you feel glad to be alive!  Bright sunshine.  Blue skies. Crisp air. Leaves changing. Early mist over the lake... 

The beauty of this day has filled me with gratitude and motivated me to return to a practice I have allowed to lapse since my husband died four years ago - that of keeping a gratitude journal.  

Gratitude is a powerful transformative force.  Author, Sarah Ban Breathnach, in her introduction to The Simple Abundance Journal of Gratitude, says that, "Gratitude holds us together even as we're falling apart.  Ironically, gratitude's most powerful mysteries are often revealed when we are struggling in the midst of personal turmoil. When we stumble in the darkness, rage in anger, hurl faith across the room, abandon all hope. While we cry ourselves to sleep, gratitude waits patiently to console and reassure us; there is a landscape larger than the one we can see." 

My husband gave me a copy of Sarah's Journal of Gratitude for Christmas the year after he was diagnosed with viral cardiomyopathy and he also bought one for himself.  Inscribed on the first page of my book were the words, "It would be wonderful to follow the ideas on these pages. Let's try."  And so began six years of gratitude journalling.

For the first several years, we each made daily entries of five things for which we were grateful - the laughter of a dear friend, licorice allsorts, sweetpeas, 19 jars of red plum jam, Mozart's Clarinet Concerto, clean sheets, the movie "Simon Birch", chest pain ending, the ability to walk on the Seawall, financial help after leaving work.  As the years passed, and illness and caregiving ate up time and energy, the entries became fewer and shorter but the intention remained and on the days when we couldn't write, we often shared our gratitude at night in the quiet darkness before going to sleep.

I was glad of the opportunity to focus on the good things of the day, not in a Pollyanna-ish way, but as a means of balancing some of the pain and sadness of our day-to-day existence.  The gratitude journals helped us to live well with Chronic Sorrow and, I believe, to stave off Compassion Fatigue as well.

Now, more than ever, I am glad of those books of gratitude for they provide an intimate and detailed picture of our lives throughout those years and they trigger so many wonderful memories that would have been forgotten otherwise.  ( I don't know about you, but I have a tendency to journal about the crises and hard things in life in order to work them through. When it comes to the good times, I'm far more likely to enjoy them without writing them down.).

So, whether your life is going well or things are in a mess, I encourage you to start a gratitude journal today.  You might want to find a lovely book with a beautiful cover and smooth pages or you might want to use an old scribbler (do they call them that any more?) or you might want to get a copy of Sarah's journal.  Choose whatever suits you best.  Then begin writing down the five things that make you grateful each day.  

(Know that some days your list will expand to ten or fifteen items and other days, as Sarah says, "... the only thing that you might be thankful for is that the day is over."  That's okay. The gift is in the intention, not the number of items on the list.)