Book Review: Passages in Caregiving...

I have just finished reading Gail Sheehy's latest book, Passages in Caregiving, and recommend it to you with an enthusiastic thumbs up. Whether you are a family caregiver or a helping professional wanting to better understand the family caregiving experience, you will find much to enlighten you in these pages.

Using the turning points of the labyrinth, (a medieval symbol of a single pathway, with several switchback turns, leading to the center of a circle which is used by many spiritual traditions as a form of walking meditation or ritual), Ms Sheehy describes eight turnings in the path around the labyrinth of caregiving:

1. Shock and Mobilization

2. The New Normal

3. Boomerang

4. Playing God

5. I Can't Do This Anymore!

6. Coming Back

7. The In-Between Stage

8. The Long Good-bye

Each of these turnings is a passage in the emotional journey through providing care for a loved one - or a not-so-loved-one.

While drawing extensively and beautifully from her own and others' experiences of spousal caregiving, Ms Sheehy also touches on the experiences of those giving care to parents. Unfortunately, little is said about those caring for children with chronic conditions or about children who are caregivers themselves. Another limitation for Canadian readers is the detailed explanation of the American healthcare system. (Though there are certainly sufficient emotional parallels in our responses to the two systems to make these explanations readable.)

The epilogue is an interesting departure from the usual content of caregiving books with its exploration of sustainable aging and who will care for the aging boomers in a world of smaller and more transient families, fewer resources, and longer lived lives in the presence of complex medical conditions. Gail Sheehy's answer to the latter is an emphatic, "Us!". She offers the model of the "village movement" to those disinterested in an old age of dependence and isolation. This movement uses the yearly fees of members, (paid according to income), and their gifts and talents, to provide each other with the kind of support that small villages and neighbourhoods once offered.

I will write more about this idea, and about the labyrinth, in later posts. For now, suffice to say that Passages in Caregiving is worthy of a place on your summer reading list.

Caveat: Gail's descriptions of her emotional experiences during her caregiving journey with her husband are achingly accurate so, if you are feeling vulnerable or fragile, you might want to try reading just the chapters that currently pertain to you, and then leave the rest for later.

Men as Caregivers ...

When we think of family caregiving, we often think of women providing the care but in fact, men make up more than 30% of all family caregivers and, in some care contexts, provide the bulk of the care. (For example, 40-53% of all primary caregivers to people with AIDS in the United States are relatively young males. And often, fathers must take on more caregiving responsibilities as their children with disabilities grow older and are harder to manage physically.) How do these men experience caregiving and what are their support needs?

Although originally thought to be less negatively affected by their caregiving responsibilities than women, more recent studies have shown that men who are caregivers experience similar caregiving "burden" to women, similar levels of depression, and higher levels of hostility and work-family conflict. As well, brothers caring for parents experience as much stress and emotional strain as sisters but seem to have more difficulty combining work and family responsibilities. Men also tend to be castigated in the caregiving literature for being more likely to "abandon" their care recipients through separation or divorce but in many cases are tenaciously loyal and persistent in their care.

Now, while I personally tend to think that the differences in caregivers and caregiving have more to do with individual personality, history and experience than gender differences, there is research to say that some male caregivers may need:

1. More opportunities to share their feelings and experiences with other men. (There is a tendency for men to accumulate more acquaintances than confidants and thus to have less opportunity to share their experiences.)

2. The availability of formal respite care services during extended caregiving as their male support system is less likely to offer informal respite.

3. Skill-based educational opportunities - bathing, cooking, laundry, etc.

4. Normalization of and relief from the stigma (internal or external) of doing "women's work".

5. Support in communicating their own needs and feelings within the caring relationship.

Fueled for Caregiving?...

Like you, I suspect, I learned about the five (or six?) food groups and healthy eating practices way back in 5th grade Health class but it wasn't until I was literally falling asleep on my feet as a family caregiver that the penny dropped and I truly realized the importance of good nutrition in my life.

My husband had been both cook and baker in our home from the day we were married and while he had tried to make sure that he'd taught me to bake bread and to put together our favourite dinners before he became bedridden, the standing joke in our family still prevailed - "If anything ever happens to Derrick, Jan will die of a Cheerios overdose!". It's not that I didn't value healthy food when someone put it in front of me - in fact, I loved it - but I had no interest in producing it from scratch myself.

Flash forward a year or two, and you would have found me cooking very small and frequent nourishing snacks for my husband. And indeed, when his snacks didn't appeal to me, eating Cheerios, (garnished with various kinds of fruit to make them "healthy"). Up all day and half the night caring for Derrick AND eating poorly quickly caught up with me. I couldn't think clearly, I had no energy, my colour was poor and I dropped two dress sizes. I would sit down on the couch "for a minute" after lunch and wake up an hour later. And, worst of all, I was grumpy and irritable at a time when I truly wanted to enjoy the days we had left. Now, there were a number of factors that went into creating these symptoms, not just the Cheerios, but it was amazing how much things improved with a little nutritional intervention.

That intervention started when my younger sister, a real foodie, introduced me to

Barbara Jo's Books to Cooks, a wonderful bookstore close to Granville Market in Vancouver. Only my sister would have guessed that the way to this non-cook's stomach was through a book - especially one with smooth, shiny pages and beautiful photographs. The first one she picked out for me to peruse was Dana Jacobi's, 12 Best Foods Cookbook, and I was hooked. Just by looking at the cover, I learned that there were 12 superfoods which, if I indulged in them, would not only make me feel better but would protect me from some of the health problems inherent in caregiving. Those 12 super stars were:

1. Blueberries

2. Black beans

3. Sweet potatoes (or yams, as we call them on the west coast)

4. Oatmeal

5. Salmon

6. Spinach

7. Broccoli

8. Tomatoes

9. Chocolate

10. Walnuts

11. Soy

12. Onions

I bought Dana's book and began to enjoy making Sweet Potato & Broccoli Shepherd's Pie, Scalloped Sweet Potato with Apple, Greek White Bean Soup, Spinach Salad with Nectarine, Blueberries, & Lime Balsalmic Vinaigrette and more. And, more importantly, my energy improved, my irritability eased and my brain began to work again. I learned through experience that fueling my body with good food bearing high quality nutrients, bought in-season to keep the cost down, was one of the best ways I could sustain myself for the years of caregiving ahead - and indeed, for my whole life. (Now, if only someone could break my cookbook addiction...!).

Summer Reading ...

I don't know about you, but for me, one of the best parts of summer is summer reading. There's something about escaping into a new book that is, at once, exciting and relaxing.

One on my earliest memories is that of accompanying my father to our local library on a hot and sunny Sunday afternoon. I was barely big enough to carry my books and manage the wide steps at the same time. I remember, vividly, walking from the bright, sticky heat of that wide cement stairway into the cool, shaded, hush of the high-ceilinged, dark paneled, Victorian building. I lay the returning books on the desk then waved to my father and headed off down the dim hallway into the equally hushed and cool Children's Department. There, sitting at the miniature reading table with it's tip-tilted, varnished, mahogany book rests, I was in heaven. It was so quiet and peaceful and there were sooooo many books to choose from. I could barely contain my delight. My Dad could have left me there all day and I would, indeed, have been a happy camper.

Today, I feel the same contentment and pleasure as I pick out books for summer reading. This year's list includes:

1. Poetic Medicine: The Healing Art of Poem-Making by John Fox

2. presentationzen: Simple Ideas on Presentation Design and Delivery by Garr Reynolds

3. Come, Thou Tortoise by Jessica Grant

4. Savor: Mindful Eating, Mindful Life by Thich Nhat Hanh & Lilian Cheung

5. Passages in Caregiving: Turning Chaos into Confidence by Gail Sheehy

6. The latest mystery novels by Anne Perry and by Deborah Crombie

7. A re-read of some of Mary Oliver's poetry

What about you? What can you take from the bookshelf that will relax, restore, and refresh you as you take time out to re-create this summer?

S-l-o-w-i-n-g Down...

There is a secret bond between slowness and memory,

between speed and forgetting.

Milan Kundera

Yesterday was a busy day and I was rushed. Many phone calls and emails to return. Writing deadlines. Planning for fall workshops. And all the usual minutia of life. During the afternoon I had a great chat with a Vancouver social worker requesting a workshop and, in following up, I sent her a Speaker's Kit by email. Only I forgot to attach the Kit to the email.

It wasn't a big deal. I recognized that I'd forgotten the attachment the second after I hit the Send button - but it reminded me of Milan Kundera's statement about the relationship between speed and forgetting. Why was I in such a hurry? Where was the emergency? If I had approached the task more slowly, I would have taken half the time in the long run. And I would have saved the social worker the time she spent emailing me back to say that the Kit wasn't there.

David Kuntz reflects on the notion of slowing down in one of my favourite books, Quiet Mind: One-Minute Retreats from a Busy World:

As recently as a generation ago, ...

people lived their lives with a conscious realization of the balance

between slowness and remembering, between speed and forgetting.

They knew that leisure was a necessary part of a balanced life.

They knew that if you moved too fast you were bound to forget something.

We know it too, but only if we stop to recollect it.

Contemporary life does not afford us the intuitive awareness of our forebears.

It is, in fact, counterintuitive to a life in balance.

Unthinking acceptance of our culture's rate of speed is a terrible, yet common error.

These ... bonds must now be noticed with full intention,

and more, shouted from the rooftops.

There are many individuals and organizations now focused on "shouting from the roof tops" about our need to slow down. There are internet sites for Slow Food, Slow Travel, Slow Schools, Slow Living, even Slow Money. In fact, there's a whole Slow Movement born of our very human desire to not only avoid forgetting, but to make a deeper connection with ourselves and our lives. We want time to live life. If we run around at warp speed all day long there is no time for the things that matter - our own mental, physical, and spiritual health; our cherished relationships; our neighbourhoods; our environment; the natural rhythms and seasons of our lives.

There is much to be gained by slowing down but how does one do it? First, I think we have to be willing to give up some of our busyness and to grieve the losses that come in consequence. (Do we really have to go out five nights a week? Do our kids really need to be involved in more than one or two activities? Must we work ten hours of overtime every pay cheque?).

Once we've freed up some time, we can make choices about ways in which to slow down or pause during the day:

1. Breathe. Whenever you notice that you're feeling stressed, pause and take three deep cleansing breaths. And, as a form of prevention, pick a trigger - the ringing of the phone, the opening of a door or cupboard, getting into your car - and use it as a cue to take three more breaths.

1. Make a conscious choice to do less. Cut down your "to do" list to what's really necessary and let go of the rest.

2. Add more space. Schedule more time between tasks and appointments and, if you have to travel, leave earlier to get there so you're not rushed.

3. Disconnect from the electronic world. Shut off your mobile devices for a while. Schedule time away from your computer. It is hard to slow down when you're constantly checking your emails or answering your cell phone.

4. Be present. Practice being mindfully present to what you are doing or whom you're with. If your attention wanders, gently return it to the task or the conversation until you are finished. Notice and appreciate the beauty, the humour, the support and the life around you, whatever you are doing.

5. Spend time in nature. Be mindful of the seasons and the rhythms of the natural world. More than anything, these will teach us a healthy pace of do-ing.

6. Eat more slowly. Take the time to grow some of your own food, if that is possible. Prepare fresh food rather than refined meals whenever you can. Share the preparation with loved ones. And when it comes to actually eating, eat mindfully. Turn off the TV. Set the table attractively. Share the meal with others. Chew each bite sufficiently to actually taste its flavour and appreciate its texture.

7. Move more slowly. Unless you are exercising, walk, cycle and drive more slowly. Notice your surroundings. Your field of attention narrows as your speed increases, and widens as you slow down and that is safer for everyone. Try some walking meditation.

8. Consider slow travel. Engage more fully with the communities you visit. Make a "home base" when on vacation and travel by public transportation or other low-impact modes within a defined area. Visit spots enjoyed by local residents rather than following the guidebooks.

9. Explore slow parenting. Plan less for your children. Allow them to enjoy their childhood and explore the world at their own pace. Read books like Elkind's, The Hurried Child, and Carl Honore's, Under Pressure: Rescuing Our Children From the Culture of Hyper-Parenting.

10. For family caregivers. If you are doing long term, 24/7 caregiving and all this seems totally ridiculous, consider asking everyone you know to sign up on a rota to spend time with your care recipient, or to be available in the house, so that you can at least take a nap or read a book - slowly - undisturbed.

Trauma and Aging ...

Last month The Canadian Press reported that Canadian military chaplains are experiencing high rates of burnout and compassion fatigue. That, in itself, is not news. Military chaplains have been experiencing primary and secondary posttraumatic stress forever. What is new and encouraging is that the problem is being recognized and addressed at official levels.

My husband was a British Army chaplain who, within six months of signing up, was posted to active duty in the Aden conflict as the British withdrew from that country with the populace at their heels. In the years that followed, he occasionally told stories of scanning rooftops for snipers whenever he left his rooms, of comforting boys terribly wounded by the equivalent of today's IED's, of writing personal letters home to their families after they died and of driving exposed through the desert to bury them, protected only by a single gunner on the back of his jeep. (Chaplains were not issued firearms.) Over time, his body succumbed to the effects of the stress and he was sent back to England with chronic pneumonia.

Despite the impact of these experiences, my husband coped quite well, from a psychological standpoint, until his mid-sixties when he developed heart failure after a viral infection. This event, with its traumatic onset, triggered the same feelings of fear and vulnerability he had felt forty years before in Aden. (And as a child in London during World War II.) As his illness progressed, so did his posttraumatic stress symptoms. In fact, during the final months of his life when he experienced increasing sleep apnea, (periods without breathing that occur during sleep), he would vividly "revisit" Aden during the breath-less periods then "return", disoriented and frightened, to the present each time he began to breathe again. This cycle would continue for hours on end, exhausting and terrorizing us both.

Fortunately, I was aware of the "new" research of the mid 1990's, research which helped us to understand and cope with these harrowing episodes. These studies of older combat veterans, holocaust survivors and Dutch resistance fighters showed that trauma survivors who were otherwise functioning well could experience a late onset or worsening of posttraumatic stress symptoms secondary to the stress of physical illness or injury, changes in environment, or medical interventions. This was what was happening to my husband and it is important information for all of us to know for a number of reasons:

1. As World War II and Korean, Vietnam, and Gulf War veterans; immigrants of war torn countries; and other trauma survivors and their families age, we will see increasing numbers of older adults in our health care, addiction and social service systems affected by late onset or exacerbation of PTS symptoms. They deserve, and will require, knowledgable and compassionate trauma-specific diagnosis and care.

2. As more of these trauma survivors enter our support systems, the possibility exists that more helping professionals, volunteers and family caregivers will experience secondary trauma exposure, creating the need for more compassion fatigue resources.

3. As both groups - helpees and helpers - age, there is also concern that cognitive impairment could keep them from identifying the sources of their symptoms and working through their trauma. This could leave numbers of survivors acting out unresolved trauma because they are no longer able to understand or express it directly.

The moral of the story for us as caregivers? As a long term care aide once said, with tears flowing down her cheeks as I finished a talk on "Trauma and Aging"-

"Listen to her. If you have trauma to heal, do it now. You never know when it's going to be too late. I see it in my patients all the time. They're in pain but I can't figure out why or what to do to help because they can't tell me what's happened to them any more."

(Caveat - This doesn't mean that we should sign up to heal our lives during the middle of a caregiving crisis. It just means that we could all do well to recognize that posttraumatic stress can worsen with age and to plan to do some appropriate therapy when the time is right - a time that is preferably sooner than later.)

For Those Who Love a Helping Professional ...

This week I read a blog post that touched my heart. It was written by Clarke Cayton, the Crisis Chaplain of the Ozark Crisis Response Unit in the US and it goes like this:

My wife has been an Emergency Room nurse for two years now. She works 7 pm to 7 am, 3 nights a week. For about the first year of this arrangement, I always found it interesting that, for the most part, I could tell how my wife's shift went by how much noise I heard coming from the kitchen when she got home. The clanking of pots and slamming of cabinet doors was a good indicator for me that I had some quality listening time in my future. Sure enough, after the kitchen was spotless and the neighbourhood wide awake, she would come to me, throw herself on the bed and either burst into tears or swear to me that she would never go back to that dreadful place.

Lucky for me, I am a Crisis Chaplain and professional stress management consultant specializing in Field Traumatology and Compassion Fatigue, so I have all the answers and know all the tricks. Ha ha, right. I would typically just hold my wife and let her cry and vent. Not much else I could do. Or so I thought.

We have been married for 5 years now and have learned a lot about what it means to put one another first, and in many ways we make a pretty good team. This being so, there are times when I find that what I am hearing from her isn't always what she is saying to me. So I have made a commitment to listen to my wife a little sharper. And what I have heard has changed my life. And hers.

What I began to hear was not that she hated her job or despised the abuse of the emergency health care system, but that through her passion to help people and her commitment to nursing excellence, every night she would put herself on the line and give it all she had. This level of investment requires an immense amount of commitment and sacrifice because, to be honest, the environment of the ER is rarely wholesomely rewarding. She was coming home physically and emotionally exhausted every morning, completely spent.

Oh, and the clanking in the kitchen? Yeah, that was my fault. See, my wife had spent the last 12 hours going above and beyond: wading through blood, vomit, bad attitudes, and verbal abuse. All because she cares about people. This is the definition of compassion, and by morning her fuel is just gone. So what happens when a fatigued wife comes home to a less than spotless kitchen after busting her tail tending to all the needs of everyone else but her own?

Exactly.

So, I tried something. I decided that if she was going to lay it on the line for the sake of others for 12 hours, I could probably take a couple of minutes and wipe down the counters, hang the towel back on the rack, and clean the junk off the kitchen table. Guess what? She doesn't come home in a tirade anymore. Because her reaction wasn't one to an especially bad night, since most nights are bad nights. Rather, it's a reaction to being in an environment where she constantly bore the responsibility to fix, help, care and make better, only to come home to an environment that needed more of the same.

When I've asked her about this, she tells me, "You have no idea what it means to me to come home and know that everything is done. It's all put away, it's all clean, and everything that I feel responsible for, you have already done for me. All that stress is just released because home is now my shelter and my rest."

Here is the key: When home is a refuge and a place for recovery, the fuel of compassion gets refilled and the courage to face the world, no matter how ugly, is replenished.

Want to be able to support your responder spouse when they are worn out from serving others?

Just serve them.

Listen to what they are really saying. And grant them rest.

This is stress management.

It's also called love.