Monday, November 19, 2012

ill spouse vs well spouse

Any time I ever try to explain this concept to Patti I find myself slipping into some mutation of “I is the IS and you is the WS as you are me and we are all together … I am the walrus, goo goo g'joob.” We just end up laughing and by then her Multiple Sclerosis dementia related symptoms have erased the conversation and we can simply start over again … or not.

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.

Thanksgiving morning will mark the beginning of my 23rd year as my wife’s spouse caregiver.

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
Caregivingly Yours, MS Caregiver @


  1. 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!

    1. 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.

  2. Well 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.


    1. 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.

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