Winter's Coming: Protect Yourself and Others ...

Fall has arrived and with it the first round of this year's sniffles, colds and flu. I remember vividly the fear this season could engender in me and in many other family caregivers.

For our loved ones with chronic illnesses and compromised immune systems, the season of "the simple cold" spelled serious trouble. Every ride on a crowded bus, every wait in a doctor's office or emergency waiting room, and every impromptu visit from a friend who was "almost over" his or her cold felt like a life-or-death situation.

Even worse was encountering healthcare professionals who were ill on the job. These wonderful helpers had the closest kind of contact with our vulnerable loved ones and their illnesses at work presented a very real threat to us.

I remember taking my husband to the pacemaker clinic for the programming of his new pacemaker.  He was already compromised by four years of life with heart failure and exhausted from a recent hospitalization. The cardio technician was "feeling terrible" and had a streaming cold. She sneezed, coughed and blew her nose several times as she attached his ECG leads, did the programming, and taught us about life with a pacemaker. Frighteningly, at no point in this process did we see her wash her hands.

Now, there are some obvious situations where hand washing must take a back seat - when dealing with aggressive behaviour, when trying to prevent injury as someone climbs over the bed rails, or during some life-threatening emergencies. However, this was not one of those situations. The presence of a tech who had come to work while ill (with the best of intentions) and who had neglected to wash her hands, put both my husband and myself at risk - at a time when we had little or no risk-tolerance left. We needed better support than that from our healthcare system.

Continual handwashing by all levels of healthcare workers, from janitors to physicians; sufficient staffing levels for appropriate use of personal sick time; improved hospital cleaning; and organizational illness-prevention strategies such as guilt-free refusal of overtime, opportunities to take  real breaks during the day, stress reduction programs and in-house exercise facilities could have gone a long way toward making our lives safer.

So, as the days shorten and the winter illnesses blow in, may each and every one of us stop to consider the impact of our simplest choices on those most vulnerable to infection - including the family caregivers who struggle to stay well as they continue their care.

How you can help:

• Practice exquisite self care to boost your resistance to "the winter illnesses".
• Get your flu shot early.
• Wash your hands before and after contact with those you want to protect - every time.
• Never visit with or care for anyone with a serious chronic illness / compromised immune system (or his or her caregiver) until all your cold or flu symptoms have gone. (I do recognize the irony in saying this to family caregivers who may have to continue caring while they're ill - but even we who care at home could ask for help more frequently in such situations.)

       

New CF Resources for the Fall ...

 

Hi everyone! I'm off to teach for the Central Cariboo Hospice Palliative Care Society in William's Lake this week, but before I go, here are a couple of great new resources for your Compassion Fatigue library:

The first is a bundle of three DVD's by Compassion Fatigue Specialist Francoise Mathieu entitled, What Are Compassion Fatigue and Vicarious Trauma?. Within the bundle are sections on the difference between compassion fatigue and vicarious trauma, 5 resilience strategies, and training in low impact disclosure and debriefing.  (Each of these sections can also be purchased as a separate DVD.) This would be a wonderful resource for organizations in rural areas who have more difficulty than most in accessing training opportunities. Francoise' trademark enthusiasm and stories make this a DVD worth seeing.  Price:  $99.00 CDN


The second resource is a new free report from the School of Social Work at the University of Minnesota entitled CW360:  Secondary Trauma and the Child Welfare Workforce. It offers different perspectives on secondary trauma from the viewpoint of child welfare supervisors, foster parents, judges, rural workers and others and provides an extensive resource list and agency discussion guide for managers and staff. You can find the report at the National Child Traumatic Stress Network.  

If you should discover other new compassion fatigue, vicarious trauma, secondary traumatic stress or chronic sorrow resources in your travels, I would be very happy to hear about them and pass them on.

Whose Choice ...?

Last weekend I wrote a post about a CBC radio series on assisted suicide. Today, CBC's White Coat, Black Art, broadcast the final installment of that series on Nagui Morcos. Here is the description of that episode:

This week, the final installment in our series on Nagui Morcos. 

Nagui first came on White coat, Black Art in 2011.  He told 

us of his intention to take his own life before Huntington's disease

robbed him of the ability to act on his own, as Canadian laws

require. Morcos had watched his father die an agonizing death

due to Huntington's. His choice reignited the debate over 

assisted suicide in Canada, and his story moved many, many

 people. Last week we aired part one of Nagui's Choice. 

Now, Brian takes us through Nagui's final days and hours with

the help of his wife, Jan Crowley and Meg Westley, the president of 

Dying With Dignity Canada, both of whom were present that day.

Again, I hope you will take time to listen to this sensitive rendering of Nagui Morcos and Jan Crowley's story, regardless your feelings about assisted suicide. The only way we can improve the range of life choices for people on the edge of life (and the family caregivers who support them) is to listen deeply to their experience and to engage in compassionate dialogue about the issue of assisted suicide.

You can read Dr Brian Goldman's final thoughts on this beautifully-produced series, and on his relationship with Nagui, in his blog post: Nagui's Choice: the Final Chapter - Dr Brian's Thoughts.

18 Great Ways to Celebrate the Fall ...

I know we aren't quite there yet, technically, but the past week has been so beautifully sunny and the air so cool in the early mornings and evenings, and the leaves so amazingly beautiful that I couldn't resist writing this post just a little ahead of the equinox.

As you will know if you've been reading this blog for a while, this is my favourite time of year and I like to be as mindful and intentional as possible about drinking it all in before we pass into the deeper hues of winter.

Here are a few of my favourite ideas for celebrating the fun and beauty of the fall:

1.  Collect coloured leaves as you walk along your favourite paths and bring them home to create colourful bouquets, to press as keepsakes of a happy day, or to paste on blank cards from the hobby shop to make your own personal greeting cards.

2.  Make two big pots of soup - squash, borscht, tomato-basil, lentil, carrot and ginger, and potato leek are wonderful at this time of year - and invite your favourite people to share a simple reconnecting dinner after the scattered days of summer. Serve your soup with whole grain rolls, green salad, and fresh cookies from your favourite healthy bakery and you have a delicious yet simple meal for sharing with friends. (Better still, make the soup yourself then ask each family to contribute one other course.)

3.  Find a great non-work book and snuggle up by the fire with a steaming cup of tea or hot chocolate. I've been reading a classic novel, Neville Shute's, Round the Bend, and it's been wonderful to escape into a story of places so far away, written so long ago. Some good autumn-oriented titles include I'm A Stranger Here Myself: My Notes on Returning to America by Bill Bryson, Choice Cuts: A Savory Selection of Food Writing From Around the World by Mark Kurlansky, Good Grief by Lolly Winston, A Season for Miracles by Rusty Whitener, Soup by Williams-Sonoma. 

4.  Make a fall container for your doorstep or a cinnamon scented pine cone garland for your fireplace.

5.  Take your family or friends on a bike hike. Plan a route and pace that's comfortable for the least experienced person in the group and stop often to take in the scenery. Finish before anyone becomes too hungry or tired. Perhaps plan a route past a favourite cafe or picnic spot or farmers market. And don't forget your helmets.

6.  Go and pick apples at a nearby orchard farm then come home and make applesauce for the freezer and baked apples for the pickers!

7.  Hold an Equinox celebration. Historically, a fall equinox celebration was held to give thanks to the gods for the bounty of the harvest. Even if you're not a farmer, you could hold a modern gathering with friends. Hold the celebration within the context of your own faith tradition. Light a candle. Invite family and friends to write something they're thankful for on a slip of paper and place the papers in a bowl. Form a thanks-giving circle around the candle. Sing a few autumn-themed songs then give thanks for:

• your home, finances, and health,
• the knowledge you've gained,
• the successes in your career, and
• your spiritual growth and development over the past year.          

Read a blessing or a short story for the fall, sing some more appropriate songs and, afterwards, read the thanksgivings from the bowl while sharing some pumpkin pie and mulled cider or apple juice by the fire.

8.  Take your kids (or borrow some) and make a visit to the local pumpkin patch. Choose a pumpkin and make a jack o'lantern and pumpkin muffins.

9.  Visit a favourite yarn shop and browse through the beautiful yarns and patterns until you find exactly the right project for the long winter evenings ahead. Or try going to your closest lumber yard for just the right piece of wood to carve.

10. Go to a fall fair with your partner or your best friend. It's a great way to sample delicious organic produce and to do a little shopping ahead for the holidays. Buy some unfamiliar, in-season produce and learn how to cook it.

11.  Go to your local coffee shop and buy a pumpkin spice latte to enjoy outside while you look at the leaves. Or make your own at home.

12.  Put your garden to bed, thanking it for its abundance.  Plant daffodil and tulip bulbs in the garden or in containers, full of hope for the spring.

13.  Take a walk with your camera early on a brisk autumn morning and take pictures of spider webs covered in dew or frost as the sun comes up.

14.  Do some reflective writing in your journal. What are your favourite things about autumn? Write about them in detail. If you don't like the fall, write about why. Go outside and notice exquisite details about nature in the fall - write some haiku to capture the moments. Write about things for which you're thankful. Write about how you feel about the changing seasons, or about the changing seasons of life. Write about the impact of fall colours on your mood.Write about one of the five senses related to your autumn experience (the smells, sights, sounds, touch, tastes of autumn). Write about your favourite fall memory. Ask what you might like to take from the slow days of summer into the fall.

15.  Visit an older or shut-in relative or friend - or a new Mom or a family caregiver - with homemade jams or preserves or some fresh produce from the market. (Fresh fruit and vegetables are often beyond the means of those on fixed incomes.) Plan your day so you're not rushed and have the time for a good visit or for a short trip out for lunch or tea. (Provided the one you're visiting has the energy).

16.  Offer to do some yard work for someone who is not able to manage it themselves.

17.  Give some of your garden produce to the food bank.

18.  Take a fall vacation. The rates are cheaper, the sights are less crowded and the weather is usually great.

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 ).


  

When Long Term Caregiving Ends V: New Beginnings ...

What the caterpillar thinks
is the end of the world ...
the butterfly knows
is only the beginning.

Anonymous

Welcome to our last post in the series on life after long term caregiving.

You will remember from previous posts that every transition, including that from the caregiving to the post-caregiving life, proceeds in three overlapping phases - the endings phase where we let go of and grieve the old life; the neutral zone where we sit in limbo while reorientation, redefinition and creativity work away beneath the surface to provide possibilities for the future; and, finally, the new beginnings phase where we start to build psychological attachment and commitment to our new lives. Today, we look at the new beginnings.

The start (as opposed to the beginning) of a new period of life is generally concrete and clear - a particular point in time - but a new beginning is a different matter. Beginnings are "internal" and "messy"; they can't be pinpointed by a date on the calendar. Beginnings are gradual and follow the timing of the mind and heart. They will not happen until we have spent sufficient time in the endings and neutral zone phases.

Human beings are ambivalent about beginnings. As Bill Bridges puts it (paraphrased):

Beginnings are strange things. People want them to happen but fear them at the same time. After the long and seemingly pointless wanderings of the neutral zone, most people are greatly relieved to arrive at whatever Promised Land they've been seeking. Yet beginnings are also scary, for they are the time to make a new commitment and actually be the new person that the new situation demands. 

Beginnings feel frightening because they:

1.  reactivate some of the old anxieties that were originally triggered by the endings phase,

2.  represent a risk, (What if it doesn't work out? What if I can't make a new life?)

3. resonate with risky times in the past, (They may trigger old memories of failures.)

4.  may destroy what was for some, a pleasant waiting experience in the neutral zone without any accountability or pressure, or they

5. may re-ignite the grief  of the endings phase. (New beginnings remind us that the old, familiar life really is gone.)

No matter which aspect of the new post-caregiving life you're considering - leisure activity, therapy for healing caregiving-related trauma, new employment, education, creating a healthier lifestyle, volunteering, or developing a new relationship or support system - you will find it easier if you provide yourself with The Six P's of New Beginnings:

1.  Pay attention: New beginnings often emerge as quiet quickenings of interest. Something catches your eye or claims your attention. Pay attention to these nudges and the directions in which they may point you. Reflect on them. Journal. Talk them over with trusted loved ones or with a coach or counsellor. Think about how they might fit together to begin to form the beginning of a new life.   

2.  Purpose:  Allow yourself to reflect upon why you want to create this new life. What is your purpose in engaging it, or this aspect of it? Why does the shape of your new life matter - because your health is failing, because you've given up so much while caregiving, because it's time to focus on yourself, because there other things you want to contribute to the world, because you have a family to care for, because your creativity is reawakening, because you want to make meaning of your caregiving experiences and share them with others ...? Successful beginnings are based on a clear and personally congruent purpose.

3.  Picture:  Purposes are important but they can be rather abstract. Most people need a picture in their minds of what they want their new life look like. (One of the losses of the endings phase of transition is that the old picture of life falls apart and much of the pain of the neutral zone comes from the lack of a picture of how a future life might look.) Allow yourself to dream a picture of how you want the new life to be.

4.  Plan: In order for your picture to morph into reality, you'll need to make a plan. Make it a plan of small, concrete, easily achievable baby steps. If any step feels overwhelming, chunk it down into smaller steps until it feels manageable. Address one aspect of your new life at a time and don't attempt to plan changes in areas where you have no control.

5.  Play your part: Take ownership of and responsibility for your purpose, picture and plan and then take action. Commit to taking each step as it comes, to revising your plan when necessary, and to hanging in until you reach the desired outcome - a healthy, fulfilling, new post-caregiving life.

6. Patience: Be patient with yourself and trust the process. Beginnings take time. There will be stumbling blocks and setbacks and unexpected changes in direction. Know that you will revisit the ending phase's grief and the neutral zone's disorientation and anxiety from time to time as you begin again. This is natural because the three phases overlap. Use these experiences as opportunities to refine new coping skills. Allow yourself to be human and to ask for help when you need it. Healthy new lives are interdependent lives.

As your transition to the post-caregiving life unfolds, be sure to find ways to celebrate each step into the new beginning and the conclusion of this time of transition. Acknowledge your hard work and find a way to symbolize your new stage in life  (buy a special book or a piece of jewellery or pottery or a painting, take a trip or a pilgrimage, train for a run or a climb to symbolize your new strength, plan a ritual to share with loved ones, make a scrapbook or a photo essay or a series of paintings of your transition).

And remember:  

When old words die out on the tongue,

new melodies break forth from the heart;

and where the old tracks are lost,

new territory is revealed with its wonders.

Rabindranath Tagore

Indian philosopher