Saturday, December 03, 2011

losing my mojo / MS caregiver

Putting up this year’s Christmas decorations I was struck by how much I’ve lost my mojo through 22 years of Multiple Sclerosis spouse caregiving.

Medical science monitors progression of an illness or disability but ignores that the family also progresses. Then again how do you measure downward economic and social mobility? How do you measure a childhood sacrificed? How do you measure the physical and emotional toll of choice? How can you even explain it when you put ‘care’ before all the other understandable motives such as life, liberty, and the pursuit of the happiness of career, income, and all the trappings of normal life? … How do you measure the loss of a caregiver’s mojo?

The following 20 second video captures what our yard looked like at Christmas time in the earliest years of juggling MS caregiving and basically single parenting.
Believe it or not that’s even scaled down from my pre MS caregiving lawn decorations. Whether you are a fan of excessive Christmas decorations or not, what is important is it was ‘me’ – I enjoyed it I - my mojo was running on full throttle.

Pictured below is now – two decades later …
While my blow mold plastic may be considered vintage to some, I’m quite sure I’m hearing polyethylene whispers about losing my mojo.

Caregivingly Yours, Patrick Leer 


  1. I think things change, Patrick, with years. There was a family up in Montana when we lived there that decked out their back and front yards, thousands of lights, decorations, etc. They were known as the house to go to visit during the Christmas season. People drove down the alley to check out the back yard, people circled the street in the front yard to catch it all. Then things changed, the kids got older, moved out of the house, got their own families, etc. Displays had been starting to set up end of October; talk about time commitment. They eventually just gave it up (there were other things going on within the family that I won't share on a public blog) but one of the sons took the majority of the stuff and started his own tradition at his house of putting up lights. Maybe one day Megan will take the torch and decorate like you used to. I think we do sometimes lose our mojo considering the circumstances, age (oops, I did say that word, LOL) and in your case the toil and stress of over 20 years of care giving.

    Look at me, loved Christmas, trees, decorating, etc. Mom died five years ago before Christmas; its been a struggle ever year to put up a tree since (and this year I'm not.....) So maybe I've lost my mojo too......

    At least you made an effort and you put out the most important part of Christmas, why we celebrate it. That speaks for itself!

    Merry Christmas!!!!!!


  2. This post comes as I debate whether to put up our Christmas tree and the various handcrafted tchotkes we have accumulated, which always was a magical thing to wake up to every day. Well, my husband (caregiver) is seriously ill, possibly terminal, and I am in the midst of an exacerbation resulting from the stress of it all. I would hate for this stupid disease to rob from me something that I have loved, loved, loved to do for as long as I can remember. So maybe I'll pick out a few things that I can do on my own so that the season does not go unnoticed. But it is heartwrenching. Actually, it makes me angry. But then I talk myself back down to earth and go into "wise" mode about it all. So I hear you. But thank goodness you were able to put up what you did. And take care of yourself.

  3. My Christmas decorations fit into a shoe box although I must say I have a mighty fine Xmas stocking. I think I only once had a "real tree" -- I have a vague memory of my ex and I post-holing through the snow in Alaska and cutting down a tree. That being said, I've always gone by places with lots of holiday lights and decorations in awe. It touches that child-like wonder that I used to have when I grew up in a neighborhood where almost everyone put up lights.

    I don't want to diminish your experience of the loss of you, however, I hope you can enjoy the down-sized Christmas.



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