Summer Camping for Family Caregivers ...

Hi everyone!

I'm back from a wonderful two weeks at the cottage and am beginning to take on the tasks of real life again. While standing in line at the grocery store this morning, I heard the mom of a disabled child commenting to a friend that camping was great but not exactly a rest for moms. Then, later in the morning, I received an email containing the following poem written by Luci Shaw from her book, Water Lines:

Camping

The river rushes along in a hurry
to get somewhere. Our tent is pitched close;
above the oxymoron of its noisy hush
we, in folding chairs on the bank,
wait to slow down, to let the mind wander,
to to turn primitive. Simplicity
is what we say we want - the current's
single-mindedness, even its monotony.

A week goes by. It would be so good
to be aimless. To be content to be aimless.

But we are mothers, keepers of homes.
At the campsite we work to keep the firewood dry,
the butter cool, the food secure from bears.
the tent zipped against mosquitoes,
the water heating for coffee.

We are caught - neither civilized or wild.
Even in the deep forest the houses in town call us,
the families, the phone messages, the bills to be paid,
the laundry; our guilt is alive and waiting.

Out in the centre of the riverbed a single boulder,
embedded in a pebble shoal, sun-washed, gleams.


The message I took from the busy mom's comment, and the poem that followed, is that trying to maintain a normal life for families while caring for an ill or disabled loved one is hard work, even - or especially - during vacation and holiday times.

The picture above was taken of my goddaughter and her mom while we were camping at Porteau Cove many years ago. Her mom, a carepartner extraordinaire, managed to do everything mentioned in the poem and more, but I'm sure that, given half a chance, she would have hired a caregiver's caregiver to come along and allow her some time to taste the simplicity and monotony she was creating so generously for us.

So, if you're camping with a family caregiver this weekend, perhaps you could offer to cook a meal or cut some firewood or do a round of dishes so she can rest awhile in one of those folding chairs ...? She (or he) certainly deserves it!

Whose Life ...?

I was driving home from the farmers market this sunny Saturday morning when CBC's White Coat, Black Art  came on the radio. With a synchronicity that made me gasp, I heard Brian Goldman announce that the topic of today's, and next week's, special broadcast was Nagui's Choice,  the story of Nagui Morcos' difficult decision to end his life before he died naturally of the Huntingtons Disease that had also claimed his parents' marriage and his father's life years before. As one of his father's caregivers, he knew what lay ahead and he determined not to die in the same way.

What made me catch my breath as I heard the broadcast introduced was the fact that today is the anniversary of my husband's refusal to take further life-saving medication in order to allow his heart failure to "take its natural course". His death, three week's later, was a more passive ending than Nagui's but still a deeply considered and much grieved choice to let go of life.

While hearing Nagui's dignified responses to the interview questions was profoundly intimate and moving, it was his partner, Jan's, description of her process of letting go that broke my heart and brought tears to my eyes.

I had experienced those same achingly bittersweet moments of shared love and appreciation as our days together counted down. I had wept through the same process of grief and letting go - again and again and yet again - as the time of Derrick's death approached. But I hadn't had to watch as my husband ended his life earlier than necessary because the laws of the land deemed waiting as long as possible, and then being assisted with suicide, a Criminal Code offence. I can't imagine having to walk that journey.      

Whatever your personal feelings about assisted suicide, I hope you will listen to both parts of Jan and Nagui's story. Answers to such complex problems as this are never black and white nor easy to find but listening deeply and responding compassionately to the lived experience of those most closely affected is surely the best place to start.

(You can listen to Nagui's Choice by clicking on the link above and then clicking on the white words, Listen to the Latest Audio. You can also access Dr Brian's blog post on the topic - Nagui's Choice: Dr Brian's Take ).