Among
the technologically too cool of modern social media, IS = ill spouse and WS =
well spouse. Obviously we are out of sync perhaps that is because our story
began in the last Century.
Caregiving
was consequential when it began for me.
Former First Lady Rosalynn Carter was about the only person making
noise. And frankly some stigmas were making my life harder. Multiple Sclerosis
was, and is, portrayed as mild. Anyone successfully juggling both caregiving for
a spouse and basically single parenting had to be a woman.
Oh yeah
and this thing you are using to read this was not around. We went to our neighborhood
library for information.
I can
still remember the first time years later that I discovered someone like me out
there in this mysterious place called the Internet.
Today
when I cruise by ‘on line’ support groups or pages they seem so adversarial to
me, more about WS vs IS.
It’s OK
to not like caregiving moments, Lord knows I get that. Maybe it’s about too much access too soon. I
know for me if I pause to take a deep breath then what I have to say comes out
different.
Bottom
line it’s always been about choice. Patti did not choose to be severely
disabled with MS. I chose to give care.
If
advice from an old dude is even germane anymore … as insane as caregiving
moments have driven me over the decades, I have always tried to remember it is
the MS I hate not the IS.
Patrick Leer
BLOGS:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/
My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/
multiple sclerosis
caregiving
care giving
social media
I remember members of my extended family having been caregivers, although that term wasn't used. It was just the way things were in the "olden days." I wish you had a larger support group -- from what I read here, not too many care givers write about their experiences. You amaze me with how well you handle things!
ReplyDeletePeace,
Muff
Thanks Muff being the 'guy' doing the caregiving much less writing about it always has been isolating. That whole larger support group thing is contingent on sooooo many variables. You play with the cards you are dealt.
DeleteWell said as always Patrick. Congratulations on 23 years of perserverance and commitment and continuing to recognize it's the disease we hate, not the person. As difficult as the journey is at times, there are many joys and happy moments as well. I hope you continue to write and that your journey as the IS will be one who beats the odds and is instead back to the WS. Warm wishes to you, my friend in caregiving.
ReplyDeleteDonna
mscaregiverdonna.wordpress.com
Thanks Donna! I don't know what it is but too often social media support groups seem to confuse that whole "its the disease we hate not the person" thing ... best of Thanksgiving wishes to you and yours.
Delete