Sunday, February 24, 2013

teach us to care and not to care

"By creating our own stories we learn to take the texts of our lives as seriously as we do 'official' narratives." Sue Austin
Earlier this month a reader commented on a March 2011 entry, butterfly effect MS caregiving “Hi everyone, I was a caregiver to my brother with multiple sclerosis for 15 years. The last 2.5 years were very difficult because my brother's disease was progressing at a very rapid rate. As a caregiver, I was often tired. Sometimes I was overwhelmed / depressed. I shared the responsibility of taking care of my brother with my mother. My mother was more overwhelmed than myself. My brother was diagnosed at the age of 17. He died December 29 2012 (aspiration pneumonia) at the age of thirty two. I miss him tremendously and at this time I am devastated. I can only say to caregivers to find a way. I would give anything to be a caregiver for him again. It was all worth it.”

Around the same time struggling with a sinus infection (at least I hope it is) for the first time in my 23+ years of spouse caregiving I could not lift Patti out of bed unattended and had to rely on the facility hoyer lift to get her into her wheelchair for an outing. … I was reminded of a line from that very same entry “The toll on your health will shorten your life, up to 10 years less than a non-caregiver, and its quality.”

Throw in the one two punch of Ash Wednesday’s dust to dust theme and Valentine’s Day Memories: the Good The Bad The Ugly from a year ago when I was concealing my own lung cancer diagnosis and I find myself wallowing in whether I am creating a story like ‘Ash Wednesday’ by T.S. Eliot
“Suffer us not to mock ourselves with falsehood
Teach us to care and not to care
Our peace in His will”

Or more like Joni Mitchell’s “Big Yellow Taxi”
“Don't it always seem to go,
That you don't know what you got
Til its gone”

Sharing our story has always been about preventing long term family caregiving for severe Multiple Sclerosis from disappearing from the ‘official’ narrative. 

Patrick Leer
Health Activist:
Caregivingly Yours, MS Caregiver @


  1. I've always been in awe of your ability to do what you do for Patti. I know it must take a toll, and when I read this, I realize how much I want to shield my husband from having to do too much.

  2. Caring for a sick or a bed ridden person is very hard. That is why these hoyer lifts are a very good invention to lessen the work load of the carer and for the comfort of the patient. -

  3. I was caregiver first, now I am both roles. Moving to an assisted living home has been our salvation, but the cost is insane and we just try not to think too much about that future. I have (so far) had good fate. No family has ever been a caregiver to my spouse nor I. I once wanted children, but now I am glad that didn't happen. I would not wish this on anyone.


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