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Trying to Take Care of The Elderly Without Really Knowing How

I’ve been reading novelist Sue Miller’s memoir of her father’s decline and death (The Story of My Father: A Memoir,Alfred A. Knopf, 2003).  After her mother’s sudden death, she and her father saw a lot of each other.  She writes of a dawning realization that something odd is going on with him.  He is different:  sadder, untidy, forgetful.

She knows something is wrong.  But what?   He is not responsive to her questions about his health and wellbeing.  Is it because he can’t talk to her or is it because he won’t?  Is he too proud or simply confused?

I am completely familiar with that feeling of bafflement.  Can’t he or won’t he?  We often ask ourselves this question about Frank.  Why doesn’t he shave every day as he used to do?  Why doesn’t he clip his nails?  Why does he seem present and connected one day and distant and uninvolved another?  Why does he tell us he’s depressed and then say he’s “fine”?   We don’t know.

Miller confesses to a feeling of relief when she finally hears her father’s diagnosis of “probable Alzheimer’s.”  I understand that relief.  At least one question answered.  From then on she can assume that it is the illness that is causing him to behave strangely.  When it comes to my dad, we still have no such certainty.

Our first impulse has been turn to the professionals.  But none of the diagnoses have quite seemed to fit.  From Alzheimer’s to the normal brain changes that occur with aging; from profound dementia to depression, none have helped us to understand him better.  I still don’t know whether we could find an authentic way to connect with him, or if we should resign ourselves to treating him like a friendly acquaintance.

Bill and I have been observing Dad fairly closely for over a year and a half, and I am beginning to understand the confusion that he engenders in medical people.  Recently we spent an afternoon with him in the ER.  He was not really sick this time—the diagnosis turned out to be ulnar nerve irritation causing some numbness in his right hand—so he was alert and able to respond to questions.

Sometimes he responded, and other times he was tired of answering the same questions over and over, or tired of sitting there, or just plain tired.  So he gave different answers or didn’t answer at all. One minute he was sitting up interacting with Bill and me, very connected and present, and the next minute, when the nurse came in to remove his IV before discharging him, he just dissociated right before our eyes.  She saw a very different Frank than the one we had been talking with a moment earlier.

I now understand that this is one reason he has received such spotty health care and some dead wrong diagnoses.  Another is that when people are as old as he, it is easier and somehow more comfortable to give them a diagnosis of dementia and then never revisit it.  For most of us, even many professionals, old age is another country, scary and threatening, impossible to understand, and preferable to stay as far away from as possible.

We still don’t know the name of the country that my dad inhabits, but we continue to search and question.

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3 comments to Trying to Take Care of The Elderly Without Really Knowing How

  • Chuck and Margo I admire you both for the devotion that you have shown to your parents in keeping them at home with you as they age. My father insists on “keeping his independence” in Assisted Living which means less of the hard physical work for us, but no less of the emotional work inherent in being a caregiver. Blogging is helping us a great deal to put our thoughts in order and sort out our feelings. We appreciate reading others like yours. Thanks!

  • Margo Arrowsmith

    My father just died. I had him for almost 5 years after Mom died. Such a good man, and yes the feelings are all there now. I was able to keep him at home, with increasing pressure to put him in a home. He died in my home in his own bed.

    I also have a blog, talked a little about the sibling issues, ambivalence.

    Its so much work, I wouldn’t even admit how much.

    http://changingtheguardblog.com/

  • Chuck

    I just came across your blog while following comments on Jonathan Rauch’s recent Atlantic article. My 88-year-old father moved in with me two years ago (I write about it in my blog at http://midlifemidcape.wordpress.com), and I’ve found that my intuition of when something is wrong is generally much more accurate than tests and medical observation. Dementia isn’t his problem (though his memory is definitely showing some problems), just a flush of chronic conditions getting worse. He can’t always communicate the issue, but I’ve learned to go to the mat if my gut instincts are telling me there’s a problem going on – and that’s my advice (for what it’s worth) to you, too. Medical pros are quick to see problems through the lenses of their own preconceptions.

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