Wednesday, January 23, 2013

hubris of the spousal caregiver

A curious thing about journaling/blogging is the ability to revisit a place and date in time as originally told through your eyes.

12 months ago I shared in an entry entitled exercise, fitness, caregiving for Multiple Sclerosis:
 “Across the years of caregiving, I’d guestimate I’ve pushed Patti’s wheelchairs at least 5,000 miles (8,000 kilometers). …
…As sweat stains your shirt you only need ask yourself - how many people do you know who will step in to push the person you care for up the hills and across the years?”
Smiling in retrospect at the change in narrative from first person to third person, would it have given away my mounting anxieties over my own health had I phrased it in the first person, “how many people do I know who will step in to push …”

Framing this entry into my lung cancer odyssey timeline, I was alone and scared. It was one month since I had learned of  my vague nodular density in my lung.

Everyone and anyone I knew, to paraphrase Jay-Z, had “99 Problems of their own … but the time to hear about my fears of lung cancer just wasn’t one of them”.

How ironic that in the real world, the dementia wild card trumps a lung cancer diagnosis – Patti still is only aware “in the now” of my diagnosis if I jump through all the hoops of explaining from scratch … often forgetting before I can finish explaining.   

Soooo in retrospect, my lung cancer odyssey has been a humbling fall from the dizzying heights of hubris as a spouse caregiver.

I am the one who has awaken every morning for 23+ years and “chosen” to be her caregiver. Patti never chose to have MS.

Dementia symptoms whether Multiple Sclerosis, Parkinson’s, Alzheimer’s or other chronic diseases erase so much more than just memories and time.  

Caregiver hubris can only confuse distinguishing the person we knew 'then' from the person we care for 'today'.

So join us in raising a glass to Ralph Waldo Emerson, “With the past, I have nothing to do; nor with the future.  I live now.”

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @


  1. You and I both have now been on both sides of this caregiving fence straddle and I can only say that I 'd love to pick a much lower fence, if one at all, to straddle!

  2. I agree with Judy and am currently straddling both sides. It is an ongoing issue, at least for me, 'who to talk to about my life and who to not.' Most often I find myself feeling alone with it all...many of my friends/family have their own sruggles. I used to not understand what people thought was so great about "Diane, you are such a good listenener." Well, now I finally understand. I wish I had the chance to go back to those days of health and listen, listen, listen---so simple to do, but means the WORLD. I catch small slips in my partner, Patrick...and I wonder. am already beyond helping her physically...what a life. Everyone should be so lucky as to have a spouse like you.

  3. Great blog! Hopefully 2013 will be the year for the cure for those afflicted (like my sister Cate) with MS. Please visit my blog: and share your story! We would love that!
    Marianne and Ellen

  4. So sorry to hear of your diagnosis. That certainly complicates everything. And the one you care for is completely unaware of your struggles. It reminded me of a much less severe diagnosis I received a few years ago - asthma - my doctor said that living with a smoker was making it worse. I told my husband that just smoking outside was not enough, he really needed to quit if he cared about my health and his own. His reply actually silenced me - "I can't be expected to change my whole life just because you have an illness." So I guess I know where things would stand if I was the one with the chronic debilitating illness. Once I regained the power of speech I tore him a new one about how I gave up my career because of his illness. He says he didn't ask me to do that. That's kind of the point. I shouldn't have to ask. Ah well not everyone is cut out for this caregiver gig.


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