"The area through which our Alzheimer’s train is rolling is too spare, too barren, too free of helpful signposts."

Posted on June 7, 2011 by

Are We There Yet?

It is one of my special idiosyncrasies that I am so anxious to have an inkling of what will happen next that I’d rather guess than leave the page totally blank. Of course, with Alzheimer’s and its ilk, nobody knows what’s next, or at least we don’t know when and how fast. Some of us even wish we could have the doctor nod gravely at us, like he would in a Lifetime TV special, and say “he has about six months.” But, with Alzheimer’s, that doesn’t happen.

A supportive group of Alzheimer’s caregivers, (with all members fumbling in the dark,) develops its own oft-trotted out nuggets of wisdom. “If you’ve seen one Alzheimer’s patient, you’ve seen one Alzheimer’s patient,” goes one. “Don’t like this stage?” goes another, “Wait six months and you’ll have a completely new set of problems.” But there’s not a thing we can say to help a fellow spouse weather the sense of living a life in limbo, other than to acknowledge that we know what it feels like.

This winter I’ve wandered into my own little cul-de-sac of derangement. As always, it’s but a kink in a relentless road, so I know it will change, but at present we seem to have crossed onto the fuzzy threshold of a gray area. The road ahead is marked with an arrow, pointing to “The Land of Hired Helpers.” Technically, we’re not there yet, despite how many times I may whine from the backseat. But it is clear from my mood, and the landscape around me, that I’ve left the city limits of the land where I can tolerate this job on my own, 24/7.

And I can’t even say why, for sure, my tolerance has flagged. Is it simply caregiver burnout? Or is it the new level of blankness Jeff has reached? It seems that in the presence of someone who wanders about the house unable to invent or implement a meaningful action, my brainwaves default to scatter mode, and concentrating on anything—a writing project, a databasing task, a book—becomes a tricky and tedious exercise.

Then this happens: I become useless and depressed, clattering around the house with almost as much purposelessness as my caregivee. Which leaves me to wonder—Do I really not need hired help yet? It is possible that, despite the fact that Jeff doesn’t yet require much hands-on care, I need some time alone, away from the static. And this is what I’m looking into, because I’m forced to conclude that the measure of whether it’s time to deploy help may be better gauged by the needs of the caregiver than the needs of the caregivee.

Fall is shaping up to be the time to test my theory of how next to proceed. I am registered for German language classes, and the young folks will have returned to college or work. Perhaps, with a hired gun taking a home shift, I will extend my Tuesdays and Thursdays, bring a mini-Mac, and get some work done away from home? There’s a question mark there because I’m not yet convinced I’ll really do it. I’m not yet convinced I really need it. The area through which our Alzheimer’s train is rolling is too spare, too barren, too free of helpful signposts.

With Alzheimer’s, that doesn’t merely come with the territory, that is the territory.

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  • Emily Clement said:

    "That's how we know we're not crazy! By comparing notes.".

  • Ina Gilmore said:

    "Finding time for yourself can be an important way to relieve stress. I know it's easier said than done. I hope with your plans for this fall you will be able to get some much-needed respite and care for yourself. And it's not only Alzheimer's symptoms that make caregivers feel this way. Not knowing what's next occurs in many illnesses and conditions. As soon as you learn one stage, it's on to another. Thanks for sharing so eloquently your thoughts and feelings. What Do Famous People Know About Alzheimers Symptoms?".

  • Linda Janes said:

    "Emily, I SO admire you ability to articulate exactly what I feel. Are you in my mind somewhere, gathering facts and symptoms so you can put them to paper? As I've told you before, I'm right on the same level or darn close to it, as your situation, with my spouse dealing with early on-set Alzheimers. I am always checking to see if you have added a blog, and please know that someone else knows exactly what you mean! Thanks for writing! Linda Janes".

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