csiblog

What Does "Caregiver" Mean To You?

Recently I had a conversation with Nell Casey, the healthcare journalist who edited An Uncertain Inheritance: Writers on Caring for Family (William Morrow 2007). Nell mentioned in passing that "people generally don't call themselves out as 'caregivers.' " There seems to be a gap between how people who care for loved ones think of themselves, and how thought- and influence-leaders describe the community at large. And that's just the point. To influence policy and practice, leaders employ the term "caregiver" to distinguish millions of people from the overall population and to suggest their commonality. But the ones caring for a child with special needs or a grandparent with dementia think of themselves as people, not caregivers. People selling things on EBay don't think of themselves as "auctioneers." A person posting a video on YouTube doesn't think of himself as a "videographer." But if these people needed laws passed in Congress, their lobbyists might use such labels.

It's a plain fact that huge parts of a population may not get recognition until their interactions become visible to everyone else. Not long ago, teenagers and college kids weren't seen as a powerful group by marketeers. Today, youth culture deeply affects the culture as a whole. Just look at Barak Obama's appeal to youth and how far it's taken him. Facebook, as a networking location on the web, has played a big role in turning "young people" into what everyone else sees as a group phenomenon.

But "caregivers" haven't yet reached this level of group identity. We haven't yet had adequate ways of finding and reaching each other -- and the world of service and product providers hasn't yet created a productive dialog with us. The community at Carespace has the chance to make a dramatic difference, just as YouTube and Facebook have. 

Do you have an insight as to why caregivers don't call themselves out as such?

Ron Slate, CMO, Carespace

Book Review: The Moon in the Water: Reflections on an Aging Parent, by Kathy J. Phillips (Vanderbilt Univ. Press)

On taking responsibility for an elderly parent, many of us hustle to the library or bookstore for the latest how-to books on managing the issues of aging. I wouldn't persuade you to do otherwise. But I would encourage you to obtain a copy of Kathy Phillips' The Moon on the Water. In 34 brief chapters, Phillips tells the story of how she moved her father from her girlhood home in New Jersey to her place in Hawaii. (Phillips teaches English at the University of Hawaii.) The episodes alone would provide both guidance and inspiration. But Phillips' does something more. She introduces us to a mythic Chinese figure often depicted in ancient art,named Kuan Yin. Known for her compassion, Kuan Yin  (whose name means "the one who perceives the sound of suffering") calmly faces the inevitable pains and difficulties of life, aiding others. It is this universal human quality that inhabits the telling of The Moon in the Water. The story-teller's voice is honest but not bleak. Her eye takes in every charming and sad detail. The writing has a quietly moving effect on the reader. Avoiding sentimentality, Phillips is a master of sentiments.

Phillip's father Marvin had been a fireman and a brakeman, a man who had seen a lot in his life and who now was equipped with a defibrillator and whose memory was fading severely. As we listen to Phillips describe their daily challenges, we barely notice how much information we are absorbing. The move to Hawaii brings with it many relatively small bureaucratic issues that add up to a series of delays and endless tasks. Marvin's railroad pension must now be deposited in a local bank; to open an account, he needs a state ID with picture. To get a state ID, he needs a birth certificate. Then comes the transfer of Marvin's health insurance from state to state. Phillips contacts the Hawaii Medical Service Association (HMSA):

"An HMSA worker, Harriet, sends me six booklets to choose form, each fifty pages. Hazarding the "65C Plus" plan, I fill out the application, which asks for a copy of Dad's medicare card. He says it's in his wallet. I unfold the dilapidated leather and find a picture of Mom from half a century ago, wearing bobby socks and a tight sweater; a picture of me as a baby, wearing nothing; ah, a card with "Horizon Medicare Blue" blazoned on the border." But weeks later, she receives a letter from HCSA sending word that the application has been rejected. A weeks-long, drawn out process ultimately results in the transfer. Phillips' chapter on dealing with her father's tax returns is a brief epic in itself.

"Frustrated by illness and exhaustion, Dad suddenly starts getting angry," she writes. "Anger has never been part of my experience of him." Marvin's moods are relatively stable on the whole. The interest here lies more in how Phillips perceives and reacts to the situation. Her ability to tap into her own Kuan Yin is the key. But I wouldn't want Phillips to be regarded as some "new age" philosopher. Everything in The Moon in the Water is rooted in reality. Shopping for Marvin's needs requires Phillips to constantly evaluate products and services. When Marvin begins to lose bowel control, Phillips writes, "Sometimes generous friends offer to pick up supplies for me. But it's better to go with them ... For example, get 'underwear,' not 'briefs.' Get sixteen-count, first choice, eighteen-count, second choice. No, don't get eighteen-count at all if it says 'super-absorbent.'  The sixteen-count is already thicker and more absorbent, for nighttime, whereas the eighteen-count is less absorbent for daytime."

I've really only touched the surface of this moving and engaging book. It's filled with the wisdom of caring. The Moon in the Water also encourages me to think: I, too, have the ability to care with sensitivity and skills for my parents.

[Published April 2008, 160 pages, $19.95]

Ron Slate

Book Review: An Uncertain Inheritance: Writers On Caring For Family

Caregivers generally summarize their situations into easy-to-handle overviews. The details are often too painful to go into. This inherent tendency toward reduction makes An Uncertain Inheritance: Writers on Caring for Family an insightful addition to the growing library of non-fiction (and fiction) focused on caregiving. These essays, edited by Nell Casey, come from professional writers, including medical writer Dr. Jerome Groopman, cartoonist/novelist Stan Mack, and novelists Julia Alvarez, Sam Lipsyte, and others.

These are writers who are willing and able to dig into the details and convey an accurate and extremely moving sense of what day-to-day caregiving involves. They’re able to capture the numbing difficulty of caregiving—from its tedious afternoons to revelatory moments.

This wide-ranging collection of very personal stories covers the full spectrum of caregiving, from families caring for young, critically ill children to adults caring for aging parents.

Several essays provide the additional perspective of being the one cared for—during mental illness, a debilitating tropical illness, and breast cancer.

Though beautifully written, wise, fascinating, and even funny at times—this isn’t easy reading. The recurrent theme of isolation winds its way through almost every essay like a dark thread. A daughter cares for her Alzheimer’s-afflicted mother, largely alone. A couple faces the death of their daughter in the ICU, alone. Another couple faces the profound challenges of autism with virtually zero support from the healthcare system.

The New York Times, in yesterday's Book Review section hinted at the problem, saying that “our society would rather not focus on this area of experience.” Going further, it’s easy to point to a national obsession with youth and vitality as a reason why caregiving isn’t as interesting as, say, celebrities overdosing or cycling in and out of rehab. But the problem goes deeper—our culture values building personal wealth and power over building communities. Communities are boring—until you need one.

I spoke with an Algerian friend recently, whose mother has Alzheimer’s (as does mine). His entire neighborhood in Algiers keeps an eye on his mother, spends time with her, and spreads the work of caregiving beyond the immediate family. It’s a shared responsibility of the community, not a personal burden.

Taken as a whole, these stories point out a strong need for broad, national support for caregivers, for more awareness, for more sharing of the rich and often instructive stories of caregiving. It’s not sad or heartbreaking work, as the Times review focused upon. Instead, caregiving is intense, messy, complicated, and ultimately,  spiritually uplifting.

Stona Fitch
Carespace.com