Thursday, May 31, 2007


Words Matter

    Yes, I watched the CBS Evening News segment on "caregivers" (which is the word either Couric or Dozier or both used, the day before the segment aired, in the teaser) to the healing injured, permanently disabled and terminally injured from the Iraq war. I haven't a lot of time, here, to cover it, but not much needs to be said. Although I "nudged" Mom, as she requested, before it aired, she napped through it. The upshot of our bet was that it was pretty much a draw.
    Because they're buzzing my brain incessantly, I want to mention two aspects of the program that impressed me. The entire segment was different than I expected in this post. The "caregivers" are military Corpsmen, somewhat akin to Physicians' Assistants but more full service and, my guess is, more highly skilled and experienced. These are the people who function as medics on "killing fields" and handle most of the business, diagnosis and treatment taking place in military hospitals and clinics. I remember, when we were young and treated through military medicine, we almost always saw Corpsmen, for everything. The doctors were mobilized when Corpsmen were out of their league, which didn't happen often.
    According to the segment, what Couric and Dozier termed "burnout" is the result of long hours and the constant need for compassion. It seems that these people often show up to work on their time off. Remember that, although they are paid professionals, they are subject to standard military pay schedules which are typically based on rank, not specialty or excellence, and they are salaried, not paid by the hour. As well, although not epidemic, it is not uncommon for Corpsmen working the Iraq injured units to become so "burned out" as to request duty in other areas (I notice, although this was mentioned in the aired segment, it isn't mentioned in the hard copy write-up).
    One of the military physicians, a mental health professional, I believe, who was interviewed about this problem mentioned the two items that I found most intriguing about this segment:    First, a word about words: I know it is common practice to scoff at new labels that add syllables and seem to unduly sanitize the old terms. In this case, though, I think the opposite is true. Caregivers are, after all, Compassion Specialists. Among all the types of care we give, compassion is the most important and the most rendered type of care. It is also the hardest, because it requires soul and character as well as skill. I'd much prefer to be known as a Compassion Specialist than a Caregiver. More important, I'd much prefer to refer to myself as suffering from "compassion fatigue" rather than burnout. Burnout implies a whole mess of circumstances that often aren't true:
  1. That the burnout is due to a malfunction, rather than incessant functioning;
  2. That it could possibly be due to caregiver failure, commonly known as "failure to 'Take Care...'", of yourself and might involve things like not getting one's oil changed on time, not getting a proper tune-up, not driving oneself wisely, etc.;
  3. Thus, it refers to people in an almost machine-like fashion, which may be somewhat accurate but only somewhat;
  4. It implies, as well, that it's possible to completely burn oneself out to the point of having to be junked out of caregiving, which, I admit, can happen, but there's also a sneaky whiff of, "if only she'd taken proper care of herself" involved in this junked caregiver assumption;
  5. Compassion Fatigue, alternately, places the blame where it belongs, on the work, not the worker;
  6. It implies a solution: Rest and emotional refreshment;
  7. Although it doesn't deny the possibility of a caregiver moving beyond the ability to perform the job, it also doesn't necessarily imply that this will happen;
  8. It gives proper respect to the work, to the most important skill involved in this work and accurately identifies the person who is providing compassion, professionally or avocationally, as a specialist.
    "Caregiver burnout" sounds hopeless and final. "Compassion Fatigue" sounds inevitable and addressable.
    I am especially impressed with the five minute mental health breaks the Corpsmen are given. Wouldn't it be wonderful if something like this, perhaps over the phone, were available to all Compassion Specialists, avocational or professional? A hotline for caregivers, in other words, staffed not by other caregivers, but by mental health professionals who were trained to respond to, for instance, a caregiver who is so beleaguered and disillusioned she is considering walking out on her care recipient, or, perhaps, walking out on life. Occasionally it helps to talk to another caregiver, but, often, other caregivers are just as befuddled as, well, the befuddled. At my worst, I'd love a calming, reasoned, detached presence on the other end of the line, saying to me, when I was at my wits' end, "Tell me why you feel this way," rather than, "Yes, I know, I've felt that way, too." Sometimes I want to know that other caregivers, make that Compassion Specialists, have experienced what I'm experiencing and have lived through it to be compassionate yet another day, but, often, I want Buddha, saying, "Step back; 'breathe deep the gathering gloom'; expel it, all of it from the seat of your soul, up and out; know that compassion is the highest behavior we can exhibit; now, go forth with eyes cleared to see the beauty around you and care, compassionately, once more."

Originally posted by Deb Peterson: Thu May 31, 04:55:00 PM 2007

Gail--I like this: compassion as a practice. I hadn't thought of it that way, but it IS a practice, a skill. How else can it exist? Wonderful.

Originally posted by Patty McNally Doherty: Fri Jun 01, 07:20:00 AM 2007

Your recent posts have been of great interest to me. To recovering alcoholics, the issues of "dependency" and "co-dependency" are all too real, they play major roles in the recovery process. When the term is bandied about without a deep understanding of it, it can lead to the same kind of misconceptions which are hurtfully applied to Alzheimer's caregivers.

For me, and I only speak for myself, listening to people remind me to "take time for yourself", "what do YOU need", and the ever present "what about your OWN family - your kids, your husband, etc" grew incredibly irritating. To an outsider, it must have looked like I was dedicated to my father's care at the expense of everything else. This perception couldn't be further from the truth. Caring for my father, protecting him, insisting he be treated with respect by all, and financially helping to shoulder the costs, all of these things were what defined me in terms I was willing to accept. What kind of daughter was I? What did the archaic words - loyalty, compassion, honor - really mean to me? Were they just words? Did they imply any sort of action? And to be true to myself, how would the actions required ever be possible in a world turned deaf as a doorknob? I decided to find out.

What I learned is the world needed changing. And so I started with myself. I was lucky in that I had a "live-in" - my mother - who loved her husband dearly and took seriously her vow to stand by him. I had a sister deeply committed not just to her father, but to me, her sister. The three of us made a pact to do whatever it took, for as long as it took. Far from being "co-dependent", we were interdependent. Far from being caregivers, we became, as you so wonderfully describe, compassion specialists. More accurately, we became the escorts, walking with my father towards his grave. There is no treatment or cure for Alzheimer's, there is just eventual death. So when one takes on the care of an afflicted loved one, it is death that confers release from duty. It is really, really hard to honor a parent who is sick with this disease, especially one who can't remember they are indeed that loved parent. I never in a million years imagined I could become the person who would do this for eleven years.

When he died, when his time was up, I performed an autopsy on my behaviour. Had I done all I could, did I honor my parents, was I the person I wanted to be. A "co-dependent" response would be along the lines of "I did it for him" or "What I need doesn't matter, it's his needs that count". A more healthy response, and one that bathed me in the salve of grace, was that I had been who I needed to be. I defined and tested my values and beliefs, and was given ample time (eleven years!) to do it. I didn't become who I wanted to be, but who I needed to be. Big difference and my father's parting gift.

Gail, as hard as it feels to be doing what you're doing, when your mom passes, when she dies, you'll be left with far more than when you started up this path. As my mom often quoted, "Look to this day, the very life of life." This, right now, this moment, is it. And it will be replenished the instant it passes, like a river to the sea.

As usual, thank you so much for giving me the opportunity to be grateful.

Alzheimer's still sucks. Needs a cure. Give today.


Originally posted by Novabella: Fri Jun 01, 09:37:00 AM 2007

"Compassion fatigue" really describes where I'm at right now. I tend to resist the labels-- caregiver burnouot, anticipatory grief, caregiver burden, whatever, but this one really seems discriptive of what I feel. I wish we could lose the other labels. I tend to operate with a much simpler set of labels: love, sadness, hope. Compassion is a good one too.

Originally posted by Karma: Wed Jun 13, 11:51:00 AM 2007

I also like the compassion as a practice talk. I also wonder how much of "burnout" is really frustration with lack of support and lack of services for the person that we're caring for.

Originally posted by Karma: Sat Jun 16, 11:20:00 AM 2007

Did you see this month's Newsweek spiel on caregivers and Alzheimer's?
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