"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.”
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 @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/
care facility
multiple sclerosis
caregiving
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.
ReplyDeletePeace,
Muff
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. - www.patientliftusa.com
ReplyDeleteI 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.
ReplyDeleteIt is unbelievably difficult to be a caregiver. I respect you very much!!! You do such an exhausting work. Not everyone could cope with it.
ReplyDelete