Saturday, August 12, 2006


I'm writing my way out of a "tragic" funk.

    Not too long ago I noticed that a webring has been developed for caregivers to those with Alzheimer's who are keeping journals and websites devoted to their experiences and the lives of their care recipients, Memory Lane Webring. Most of the journals I regularly visit have joined. I've been vacillating, although I haven't taken the time to figure out why; I've been internally and automatically explaining my lag by telling myself, once again, that "I'm not a joiner." Today, finally, I decided to confront my reluctance and attempt to understand why I'm keeping my journals out of this well intentioned and doubtless extremely helpful webring. I revisited the webring's home base, reread it's apologia, and found myself focusing on the word "tragic". This word seems to be the pivot around which my conundrum swirls. I have trouble applying this word to my and my mother's experiences.
    As a reality check, I decided to search my own journals to see if I had ever used the words "tragic" or "tragedy" to describe my mother, me, or our experiences. I discovered that the words (most often "tragic", nine times in this main journal) do appear but never in describing my mother's or my lives, separate or combined. I wasn't surprised. In fact, typically, when I use the word "tragic" and it's derivative "tragedy", I am speaking out against the overwhelming tendency to approach old age and dementia from this perspective.
    On the heels of this activity I recalled my recent post in which I reacted to someone else's sense of the tragedy of taking care of one's elderly mother. I was reminded that the fulcrum sentence defining my despair is the one in which I realize that the essay into which the searcher clicked offers no support to those ensconsed, either personally or by way of caregiving, in the "tragedy" of dementia or, old age, for that matter.
    As you know, I now keep up with a few blogs devoted to caring for parents who've been diagnosed with Alzheimer's. I often comment in their journals and correspond privately with the authors. I try, very hard, to empathize with their experiences and sometimes even try to offer consolation and support but, the truth is, the reason this is hard for me is that my and my mother's experiences are a horrible match for theirs. I know this. I've addressed this in this main journal. More than once. I've addressed this in comments to these blogs and privately to some of the correspondents. I've never apologized for this, it would be silly for me to do this, but I'm always, always aware that, fundamentally, I have nothing to say that would help them in any way.
    I acknowledge the tragedies of their parents' lives and the sense of tragedy that comes from being closely involved in those lives. I am so aware of the perception of tragedy surrounding Alzheimer's and caring for those with Alzheimer's, other forms of dementia and advanced old age that I hurt every time I read an entry describing the difficulties and despair of their lives.
    And yet, and yet, and mother's and my journey isn't there. Not even on the fringes. My despair, when I experience it in connection with caring for my mother, comes from the exhaustion of going it alone, not the tragedy of her condition, or mine. My agitation comes from the thoughtlessness of the professional community (and, sometimes, the lay community) surrounding pursuits of living with dementia and old age and caring for someone who lives with these conditions. Most of my despair or agitation, I repeat, most of it comes neither from my mother's life nor my perception of her life as I journey with her, nor my perception of what it's like to care for her. When I become agitated with her, say, repetitiveness, her inability to understand something that I'd like her to understand, or any of the other myriad behaviors, hers or mine, that have the power to overwhelm me, my ability to adjust my attitude eventually kicks in and she and I quickly turn the corner onto a more felicitous street.
    It's not that I don't want to support the lives of those who perceive themselves to be living with the twin tragedies of Alzheimer's and old age. It's that I realize I'm not in a position to do this. Call it my mother's unusually easy old age despite her challenges, call it my peculiar mindset, call it what you will. I'm not there. I'm here. Despite all my and my correspondents' valiant attempts to forge paths between their experiences and mine, I sense that those paths are merely sympathetic, not empathetic, and, as such, are tenuous, at best, and not at all nurturing. This isn't an apology, it's just a fact.
    I'm establishing a link to Memory Lane Webring in my Honorable Caregiver Blogs link section, because of my awareness of the many who live with the "tragedy" (those are quotes of respect, by the way, from someone who isn't familiar with the nature of the tragedy but flinches when she sees others dealing with it) of Alzheimer's and my desire to direct those who are searching for appropriate support. I can't bring myself to join, though. Maybe, someday, the tragedy will visit me. It hasn't, yet. Thus, I feel, the glory goes to those embroiled in the battle. I objectively acknowledge that I am not on the battlefield and I am not one of those soldiers. I salute all who are, though, with all my heart and soul.

originally posted by Deb Peterson: Sat Aug 12, 06:50:00 PM 2006

Gail--You have got me thinking (as you always do) about our situations and how they reflect or do not reflect each other. Whatever conclusion you come to about the webring will be the right one, because--as this post shows--you consider the situation honestly and scrupulously. What's interesting to me is that I would characterize my situation with my mother in terms much like yours: "My despair, when I experience it in connection with caring for my mother, comes from the exhaustion of going it alone, not the tragedy of her condition, or mine." This is something I'm only becoming aware of now--your careful reading of Michael's intro, especially the word "tragic" has got my mind turning, and I will probably properly respond to you with an entry in my blog (this is where a trackback would come in handy...). Only because I enjoy ruminating about ideas like this, especially when I find myself having an unexpected response. I just do not think of my mother's situation as "tragic"--it's profoundly sad for me, but not tragic. But that will be the subject of my next entry--what I'll say here is what I've said to you in earlier emails (but maybe in different words): I see these journals as being about our own experiences--of course they stem from our mothers' situations--but since we can't really get into their heads, what we are really writing about is our own lives. Sure, many of the details are different, but it is NOT true that you have nothing to say to help me in my situation!! Maybe my reaction is based on my outlook--that I don't see my mother's situation as tragic--and other caregivers in different or similar situations might disagree with me. But my point is (I think) that, I feel a real kinship with you, based on our shared experience, as well as on the ways we've been able to connect beyond the caregiving. Our mother's conditions mean everything and nothing (wow, I'm starting to sound like Waldo!)--I think this is the point where I will shut up and think about composing an entry on the subject, instead of co-opting your blog!
originally posted by Mike: Sun Aug 13, 12:30:00 AM 2006

Gail Rae, This post also got me thinking. I've never thought of my parents' situation as tragic. They've both lived a long time and have usually been happy. As a family, we don't expect them to be immortal or to be trouble-free, so in many ways our expectations have already been exceeded. No tragedy there. Like you, I also searched my weblog for 'tragic', and discovered that the only application to my parents is where I point out that by the time they really needed each other, they had grown apart.
However, this is a semantic issue, and who can say what others mean when they use 'tragic' or any other word?
What I can say is that your comments at my weblog have helped, not in making our problems smaller, but in keeping our morale up. You're a cheerleader!
originally posted by Bailey Stewart: Mon Aug 14, 07:40:00 AM 2006

I have nothing to say that would help them in any way.

Your unconditional support on our blogs and through your emails means more than you can ever know. You said it when you said "going it alone" - you remind me that I'm not alone - caring for someone, whether it be through AD, cancer, or any other circumstance that would require "being taken care of" is hard work regardless the circumstance and often leaves the caregiver feeling isolated. We have that shared experience, no matter what the degree of AD or dementia involved.
originally posted by michaelm: Fri Aug 18, 06:52:00 PM 2006

I'm curious, you've linked to my webring.
Do I know you?
You've never visited my blog...

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