Tuesday, July 20, 2010

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.

Friday, July 9, 2010

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.

Saturday, July 3, 2010

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...!).