Thursday, 1 December 2016

CAREGIFTED: Respite, Poetry and Other Gifts for the Caregiver Soul

Recently, I've had the pleasure of corresponding with a great champion of caregivers, the award-winning poet and founder of CareGifted, Heather McHugh.  Heather won a McArthur Fellowship and decided to create a charity that would fund respite holidays for caregivers. If you need a break, have a look at CareGifted's website to see if you qualify. 

To illustrate just how sensitive Heather is to the daily realities of caregiving, read her deeply moving poem.


Of life, par excellence, who is the scholar? 
Who marks its prosodies as she does, gifted to discern

How fates revise a partner's eyelights, or the muse retunes
a mother's groan?  Who else

could stand it, standing by,
or understanding all alone,

so many months of eye-blinks, years of minutes,
while a child must struggle for her wits

or elder for his breath?  How many learn to bear
The bearing down, while simultaneously

Bearing up?  And who will mark the tiny
Calibrations in the text, if not herself, himself, or you?

How many have such friends,
for the asking, for the tasking, for the end

of a long relentlessness?  All boundaries
are sounded there, beyond the daily

thoroughfares, or just above,
where caregivers at painful length refine

their feeling for the articles of fate we others
only hastily or late will grow awarer of.  And if,

mid-stress, there comes a bit
of stroke-struck luck, or half-

intelligible phrase, or single spoon a palsied child
delivers unassisted to her mouth!—whose joy

is greater then, than hers (whose help may long
have been thought better of)?  Of life it's not

her sacrifice we ought
 to celebrate: it is her love.

Tuesday, 29 November 2016

To End Ntl. Caregivers Month: Our Ultimate Lesson

All this month of November, I've been reflecting on the life lessons that caregiving teaches us. I've talked about gratitude, kindness, patience, wisdom and resilience.  I even wrote about how we learn to see in two ways, simultaneously.

But now that the end of November is nigh, my last lesson of caregiving is our understanding of mortality.  We live in a society that denies death. We grieve silently and privately. We try to remain dry-eyed in the name of dignity when it is right and proper to weep. And magazines are full of messages proclaiming the triumph of youth over aging and independence over frailty.

At home, looking after people we love, we learn a different way of looking at life, suffering and death. Many of us do not live on farms, but we are slowly coaxed into understanding that death is a natural part of life.  A friend of ours lives in a rural part of the UK. Recently, she told me about the death of a friend and neighbour who passed away from cancer. "Everyone in our valley gave our friend the most beautiful send-off. They know how to deal with death around here. They don't hide it. Everyone worked to spruce up the church, the grounds, the hedgerows. Women came and went with food for the family. Granddaughters sang and play around her casket which was in the living room all week. Grown sons dug the grave. Now that was really something to witness. Hundreds of people came to the funeral. It was a most amazing send-off." Certainly, most of us won't experience funerals this way, but reading about this country funeral, we know that our contemporary rituals have lost something important in the way we say goodbye to those we love most in the world.

Atul Gawande's deeply wise and moving book BEING MORTAL is a guide to being happy in life by looking mortality straight in the eye. Like most of life's essential truths, accepting death as an essential ingredient to happiness is as paradoxical as 'the only certainty is uncertainty'.  Members of the general public may not think about suffering, dependency or death very often. But caregivers sure do. We think about these big issues every day. We ponder them as we mourn the losses in our aging parents or in our spouses with critical illness. We reflect on death and dying in the ICU with our children whose disabilities sometimes cause life-threatening crises. And we are forced to co-habit with grief throughout caregiving, but especially after someone we've cared for finally dies.

Recently, I read a new book on this theme - Love Your Life to Death: How to Plan and Prepare for End of Life so You Can Live Fully Now by Yvonne Heath. Yvonne is a veteran nurse whose stories of professional and personal caregiving serve to teach, empower and reassure us so that we can plan a good death with the love and support of family. This highly readable and practical guide to accepting mortality is a little like attending a private session with a death and dying coach. Yvonne is so knowledgeable, supportive and non-judgemental that everyone will benefit from her wisdom. Just as births are different and unique to the person, so are deaths. Yvonne knows that every family needs to plan differently.

In closing National Caregivers Month, I would say this: if there's a wise man at the top of the mountain who knows the meaning of life, he is a caregiver. And he would say that accepting death is part of that meaning.

Tuesday, 22 November 2016

For Caregivers, It's All About Gratitude

My husband Jim and I are in Milwaukee visiting our daughter.  Natalie works here at an arts research foundation and we really wanted to see where she lives (it's so important for us parents to visualise our kids in their surroundings!). It's a wonderful city and we're excited to leave for Dayton, OH tomorrow where we're joining Natalie's boyfriend and his family for Thanksgiving.

Thanksgiving is always a time to reflect on gratitude. We wonder what we'll say this year at the dinner table - what exactly ARE we grateful for? Caregivers know that every day, there must be at least one thing to be thankful for. And that mindful practice of purposefully feeling gratitude is one of the keys to surviving long term caregiving.  Science proves it.

So, what am grateful for this year?

  • I am grateful for my health - that I can still dance and exercise.
  • I am grateful for my home and for cooking and eating good food.
  • I am grateful that we are all alive and relative pain-free, especially Nick and my Mum.
  • I am grateful for the wonderful people who help our family care for those we love.
And most of all, I am grateful for the love in my family and in my circle of dear friends.

This Thanksgiving, I wish you all grateful hearts and peaceful minds - good food and kind conversation. All the best and Happy Thanksgiving, everyone!

Thursday, 17 November 2016

The Emperor of Caregiver Talents: Kindness

The problem with kindness is that we take it for granted. We assume that it will be there when we suffer and need it the most. But human kindness is that rare and natural resource in our world.  It's endangered by the race towards independence and self-reliance, those old enemies of illness, babies, disability and aging.

Caregivers are the keepers, nurturers and practitioners of all the secrets of kindness. We know how to comfort without calling attention to frailty. We have learned to anticipate pain in our loved ones even before they do. We've memorized recipes for the soups and casseroles that can tempt even the most reluctant palates.  We reminisce, even when the dishes need clearing up. And we call friends to come over and visit if loneliness rears its ugly head. The kindness isn't just in the act of telephoning, it's in keeping it secret so an elderly parent may experience the delight and pride that an old friend dropped in unexpectedly, 'just because'.

But kindness isn't only about comfort and joy. No, science has shown that it has real, healing benefits. Caregivers know best and we always have. The world needs to listen closely and learn.

Sunday, 13 November 2016

Two Eyed Seeing: The Common Wisdom of Aboriginal Peoples and Caregivers

Last week I happened to be in Toronto for a Master Class in patient and family oriented research. I'm passionate about putting the patient and family experience at the heart of research so that we can have programs and services based on the truth of what happens at home when those we love become ill or infirm. 

Anyway, that course is where I first heard about Albert Marshall, an Elder of the Mi'kmaw Nation in Nova Scotia and a passionate advocate of cross-cultural understandings including an idea call Two-Eyed Seeing. 

Two-Eyed Seeing (or Etauptmumk in the Mi'kmaw language) refers to learning to see from one eye with the strengths of Indigenous knowledges and ways of knowing, and from the other eye with the strengths of Western knowledges and ways of knowing... and learning to use both these eyes together, for the benefit of all. 

It's clear how this idea can transform the conversation between, for example, social policymakers or health care providers and members of First Nations communities.  But I began to wonder if this idea doesn't apply more broadly to all caregivers. 

First of all, caregiving is all about Two-Eyed Seeing. Take yesterday. Fresh from a three hour case conference about Nick's nursing care on Friday, I visited Mom yesterday. She needed groceries, so I drove over to the store around the corner from her apartment. As I pushed the cart up and down the aisles, I looked at the strawberry mini-pies. Would Mom eat that? She's not hungry these days - what could I buy that would tempt her. Over there, boxes of frozen sausage rolls were on display - Nick loves those!  I could pick one up for my boy and drop it off on my way home. Reflecting on that short shopping trip, I was thinking with four eyes - four, counting Jim at home because I was thinking about what to cook for dinner last night, too.

In advocacy, in research with patients and families, in working with physicians and policymakers, we need to ask everyone to join us in practicing Two Eyed Seeing. This is the duality of life at home looking after someone we love. So if people in 'the system' want to help us, they need to understand that.

Friday, 11 November 2016

Remembering My Father Today

Today is Remembrance Day in Canada, Veteran's Day in the United States. 

Today I remember my father, James Edward Thomson, who fought in Europe with the Royal Montreal Regiment and won an award for bravery from King George and was mentioned in dispatches. Near Antwerp, my Dad was off-duty and walking back to barracks when he noticed a crowd gathered around a field. He went over to investigate. Two children had been collecting chestnuts, not realizing the area was mined. A mine exploded, very badly injuring one boy. Everyone in the crowd was afraid to enter the area. My Dad crawled to the boy, checking for trip wires with the barrel of his pistol. He brought both children out, saving them. Lest we forget.

In 1973, my Dad suffered the first of three strokes.  Over the next two years, he would lose his speech and his mobility. My Dad's infirmity was my first experience of caregiving in our family. Of course my Mom was Dad's caregiver, but I remember how everything, everything changed after his strokes. My sister and I helped the best we could, but it was a hard coming of age for us. He passed away in 1975 and he is still missed every day. He was and still is, my first personal hero - my Dad.

Friday, 4 November 2016

National Caregivers Month: The Third Pillar is Patience

Patience. We learn it the hard way in caregiving. In this break-neck-speed society, caregivers are like student drivers, always trying to put our foot on the gas, but with 'fate', the driving instructor, firmly putting his foot on the metaphorical brake. 

Caring for young children, an elderly parent, a loved one with disabilities, or someone dear with illness - all these situations call for slowing down, putting our worldly concerns on hold and being patient. We are patient when our loved ones eat slowly at mealtimes, we are patient waiting for their test results or for insurance settlements.  The urge to scream at the different paces of competing needs is real in every caregiver's life. 

But patience always wins, because it must. Aging, infirmity, living with illness or disability - all of these ways of getting through the day whether you are giving or receiving care - all of these take time.  More time than we are used to devoting to tasks such as getting dressed or having a bath.

And palliative caregivers know only too well that it requires time and patience to die. And yet when that frustrating slowness suddenly halts and the life of a dearly loved one ends.... this is how one caregiver expressed her feelings in an online support forum:

I lost my Dad on Sunday night. He was so sick for so long but in the end he died within 5 minutes. After almost six years of taking care of him and seeing him every day I can't believe I am finally out of a job. Never thought I would miss the burden of caregiving but I feel lost without him as my daily anchor. For those who are still in the midst of it, I hope you can find some small joy before it's over. The other side of it seems even tougher. 💕

Learning to be patient is connected to learning to love in the form of compassionate action that we call caregiving. It is both a blessing and a curse - like most things in life. And the stops, the starts, the quickness and slowness are all hard to absorb. Caregiving is never just one speed - the constant is the requirement for patience, even patience to endure grief.