Monday, October 31, 2011

5 Things Family Caregivers Wish You knew ...

The joys of family caregiving - yes, there are some joyful times - can be tempered by a lack of understanding within the caregiver's family or support community. No one can completely understand another's journey, particularly when it is as complex and all consuming as family caregiving can be, but what a difference it can make to a caregiver's day when he or she realizes that someone "gets" at least a part of their experience.

Here are a few of the things caregivers at Compassion Fatigue and Chronic Sorrow workshops say they wish others knew:

1. We're not all the same. Family caregiving is a highly individual journey. Caring for a chronically ill or disabled child is vastly different from caring for one's dying spouse and that experience is different again from caring for an aging parent or friend.

There are also differences in the experience of caregivers between people and across the length of the caregiving journey, depending upon their personal history of trauma and loss, their financial status, the quality of the caregiving relationship, the extent of the support system, co-existing stressors, access to appropriate care and respite, and many other factors.

To assume that we know the day-to-day experience and needs of "family caregivers" is quite disrespectful. It is not until we have heard an individual caregiver's story that we can begin to understand, empathize and respond appropriately to their needs.

2. We won't get over it. "Aren't you over it yet? It's been 7 years ..." How many long term caregivers have heard these words, or variations on the theme, over and over again across the years?

The truth is that many family caregivers (and their care recipients) experience chronic sorrow (CS), the intense, recurring and continuing grief that can affect people with permanent impairments and those who love them. This normal grief response arises from the aching discrepancy between how life is and how it could or should have been. It is not so much an anticipatory grief, though that is certainly present, as it is an intense sorrow over current losses, large and small, that accompany the illness or loss of function.

CS lasts from the time of diagnosis until the death of the person with the impairment. Family caregivers don't get over it and and it doesn't diminish over time. Because the core loss lasts a lifetime, so does the grief. The good news, however, is that you can learn to anticipate vulnerable times and to live more comfortably with the grief.

Research shows that chronic sorrow can be mistaken for depression, sometimes causing caregivers to have antidepressants prescribed when what is really needed is education, companioning and/or therapy. CS symptoms differ from those of clinical depression in that the caregivers are able to feel and express a full range of emotion, are usually highly functional and, perhaps even more than the non-caregiving population, can still "feel the joy and see beauty of a sunset".

3. Life is not always so bad. Family caregiving does have agonizing times but it is not always a negative experience. In fact, living close to the edge of life with someone you love can, at times, provide a new perspective, a deep sense of gratitude for the ordinary and an exquisite awareness of all that is good about being alive.

It is as important for supporters to recognize that there are good times, as it is to acknowledge that there are bad ones. Rather than making assumptions about the caregiver's emotional state on a given day, it is important to ask and then listen to the response.

I'll never forget waking on a beautiful spring morning, finding that both my husband and I had slept through the night and realizing that, after a medication change, he was no longer in pain - I was thrilled! A social worker came to see us later that morning and chose to focus intently on all that had been bad about the previous week. I was not thrilled! For the first time in ages, I had wakened feeling truly happy and that happiness was what I needed to have reflected back to me, not the anguish of the previous week. If only she'd asked rather than assuming ...

4. We sometimes choose not to take care of ourselves. Many family caregivers actively choose to "live at risk" for a period of time in order to share life with an ill or disabled loved one. These caregivers have no interest in respite or attending caregiver-oriented programs because they have decided that they want to spend whatever time remains with the person they love.

Caregivers choosing to live at risk do not benefit from continuing messages about how they are not doing what good caregivers must do in order to take care of themselves. Rather, they are more likely to feel supported when others listen and hear their goals and find ways to help them reach them. If you can offer some self care ideas that will fit within the context of their goals, so much the better, but constantly nagging people to "take care of themselves" is far more likely to have the opposite effect.

5. We sometimes have trouble asking for help. For any number of reasons, be they societal norms around self-sufficiency, family programming, belief that the help is not available or dependable, fear of being dependent or beholden, fear of burning out one's helpers, or difficulty identifying needs, family caregivers may have trouble asking for help.

In such cases, supporters can ease the difficulty by regularly offering specific, dependable help - is there something specific I can do for you today? May I take your library books back onFriday morning? Which day may I mow your lawn? May I pick up your groceries every Tuesday? May I drive you to the dialysis centre every other morning? May I make dinner for you next Wednesday night? May I drive you to church every other Sunday? May I wrap your Christmas presents for you? Do you need help with your income tax? May I develop and update a schedule of friends for respite care so you can get out on Monday mornings?

There are probably many other things family caregivers would like their supporters to know. If you can think of any, please feel free to add them.

Photo by BigStock Photos

Wednesday, October 12, 2011

A New Documentary - Overexposed: The Cost of Compassion...

On my return from the Thanksgiving weekend I was delighted to find an email from Dr Robert Marshall Wells, the MediaLab Faculty Advisor at Pacific Lutheran University in Tacoma, WA.

Robert had written to tell me about the premier of the MediaLab documentary, Overexposed: The Cost of Compassion, in Seattle on October 8th, a celebration which he described as "an unqualified success". I have had the privilege of watching the development of this documentary about compassion fatigue almost from its inception and I couldn't have been happier to hear about the positive reception that greeted the final product.

A team of PLU students - Elizabeth Herzfeldt-Kamprath, Hailey Rile, and Katie Scaff among others - travelled thousands of miles around North America interviewing more than 60 CF specialists and gathering information and film footage for the project. As they learned more about CF, they realized that it was much more than just the source of diminishing contributions to charitable agencies, (more correctly called donor fatigue or, perhaps, compassion burnout), - rather, that it is a condition of secondary posttraumatic stress that overwhelms many who work with the suffering or traumatized. And, thus, the scope of the film began to grow.

I hope to receive a copy of Overexposed in the near future and am looking forward to the possibility of showing it here in Vancouver sometime in the New Year. (Watch this space!) In the meantime, a heartfelt, Congratulations!, to Robert, Elizabeth, Hailey, Katie, Annika and all the others involved. A job well done.

Thursday, October 6, 2011

Thanksgiving ...

Author, Madeleine L'Engle, wrote the following as she reflected on a scene from the play, Our Town:

In Our Town, after Emily has died in childbirth, Thornton Wilder has her ask the Stage Manager if she can return home to relive just one day. Reluctantly he allows her to do so. And she is torn by the beauty of the ordinary, and by our lack of awareness of it. ... She asks the Stage Manager, 'Do any human beings ever realize life while they live it?' And he sighs and says, 'No. The saints and poets, maybe. They do some.'

Awareness of "the beauty of the ordinary" can become a source of enormous thanks-giving if we can only take the time to be more mindful. As we are able to live more in the moment, we are able to apprehend the beauty in the small things - a baby's smile, the smell of autumn bonfires, the feel of a toddler's hand curled around your finger, the crispness of the air, the laughter of kids playing hockey in the street, the colour of the changing leaves, the warmth of a shower after a cold afternoon putting the garden to bed, the fragrance of a cup of tea as you curl up with a good book... so many things.

May I encourage each of us to notice and share our gratitude for at least a few "ordinary things" as we spend time with family and friends this holiday weekend. And, if you will be on your own, perhaps take a moment to write a list of "ordinary things" for which you're grateful in your journal and notice what a difference it can make to your perspective.

With every blessing for a safe and Happy Thanksgiving to you and yours,


Monday, October 3, 2011

5 Great Ways to Encourage Each Other ...

This past week I was surprised, touched and encouraged to receive an email from a workshop participant thanking me for "moving her" with the story of "19 jars of red plum jam" and for "transforming my personal experience of caregiving and compassion fatigue to wisdom that I could pass on to others". I felt very grateful to her for her kindness in taking the time to write those few lines.

Receiving such a generous email got me thinking about the whole notion of encouragement. What, exactly, does it mean to encourage someone? What is it for? How does one do it? Why don't we do more of it when it can literally transform another's day - or life?

The root of the word encourage comes from an old French word, corage, meaning heart. To have courage can be thought of as "to have heart". The prefix en in en-courage means "to make or to put in". To encourage, therefore, can be literally translated as "to give heart or to put heart in someone".

To encourage is to help someone develop courage - courage to continue growing and developing into the person he or she wants to be; to feel free to risk, to make mistakes and to learn from them. It is not so much about praise for something accomplished as about recognition of the effort, the capability and the resilience involved.

There is much about life as a helper that can be dis-couraging or disheartening. (I won't go into them here because you know them as well or better than I do.) The point is that there is always something that we can do to help lift another's discouragement - or to fuel their life energy even if they're not discouraged.

I once attended a church where, held in permanent wooden holders at the end of each pew, were cards printed with the words, Encourage Each Other ... . Below the words was space for writing something encouraging to someone else. I saw people tucking notes in others' purses and pockets or handing them to them directly with a hug. I saw folks quietly reading those notes with smiles or tears of happiness and I know that on the days when I received one of those little cards, I walked out of the church with an extra spring in my step.

So, what are some of the ways we can begin to encourage others?:

1. Listen and empathize:

When someone tells you how they're doing, really listen and empathize accurately. There's nothing worse than trying to share the reality of one's situation with someone who feels the necessity to "cheer you up".

The more we are able to listen deeply, and accurately and nonjudgementally reflect back what we are hearing, the more the person we're trying to encourage will feel heard and accepted. And, as counter-intuitive as it sounds, the more their painful emotions will begin to dissipate.

2. Ask clarifying questions:

Ask questions that invite the person to recognize and build a sense of their choice to use their personal power. Gently use your own curiosity and interest in problem-solving to stimulate theirs'.

3. Use your compassionate presence:

Sometimes the most encouraging thing we can do is simply to "be" with the person we want to encourage - to spend time with them while keeping our mouths closed and simply sending out energetic support.

Sometimes having someone hang-in with us as we struggle to find our balance or solutions, all the while showing their compassion non-verbally through authentic facial expressions or voice tones or continuing presence, can be the greatest of all gifts, for implicit in that inaction is the faith that the person will find their way.

4. Be a good role model:

Applying yourself to a task, even if you fail, will influence another to apply him or herself. Sharing your feelings transparently, as you go, will help the person you are trying to encourage to see that they are not the only one who feels anxious or stuck or worried about imperfect outcomes. If you move forward despite these thoughts and feelings, you can encourage others, by example, to do the same.

5. Give concrete signs of recognition:

Write a hand-written note that can be read again and again, recognizing a person's effort to manage a difficult situation or to take a risk or to just keep putting one foot in front of the other.

Give a small, meaningful gift that specifically acknowledges your affection for the person and your support of their goals and their actions toward those goals - a plant, an appropriate book, a poem, a special picture, a plaque, an ornament or token, a quotation.

Try planning and offering a ritual of encouragement - one that acknowledges an ending and a new beginning such as a new career or the beginning of widowhood, or perhaps one that marks the beginning, mid-way point or ending of a medical treatment or a period of study; or one that celebrates a time of passage such as a graduation, moving away from home, a spiritual awakening or commitment, retirement. Use your imagination...

Consider instituting a program of encouragement in your workplace, your organization or your family similar to the one I encountered in the church years ago. Create encouragement cards that are readily available to all members, from cleaners to CEO's, and give frequent reminders of their availability. Perhaps, offer opportunities for people to speak about how the cards have affected them and the culture of the organization.

So, I have offered some answers to the first three of my questions but I will leave the fourth one to you - Why don't we think to offer encouragement to each other when we know that it can literally transform someone's day, or even their life? ...