Wednesday, October 31, 2012

Nature is transient, MS is relentless

Rounding up linen and making up Patti’s bed at her care facility may not be the most typical Hurricane Sandy preparedness story but then again in almost a quarter century of Multiple Sclerosis spouse caregiving little has been typical.

Apparently awakening from her Sunday afternoon nap was accompanied by a significant episode of vomiting. Aides had cleaned up Patti, stripped bed linen, cleaned bed, and room and redressed Patti transferring her to her wheelchair.

I had intended to stop by anyway kind of a reverse extension of “mi casa es su casa”; could I run an errand for anybody, etc. Plus anytime I can attend to Patti it prioritizes her care. Her MS cognitive symptoms prevent her from directing her own care much less remembering what is going or or even what she wants.

So I took her out for some fresh air in the calm before the storm and some light happy food for her tummy. Soon she was ready for bed and that brings me back to making up her bed.

I found myself reflecting on the handful of hurricanes, even an F4 tornado and blizzards that have huffed and puffed through my decades of caregiving but frankly paled contrasted to Patti’s rapid progression to severe Multiple Sclerosis. Nature is transient, MS is relentless.

My pursuit of a philosophy of a stoic indifference to my own existence is the only way I have been able to survive as a spouse caregiver. Somehow indifferent I was invincible.

Successfully executing the one person unassisted transfer of Patti from her wheelchair to bed I noticed the intermittent shortness of breath that has been bothering me and found myself distracted.

Cracks in the armor are disturbing. Cancer cracked the armor. That ol’ stoic indifference swaggered with invincibility.  True I had surgery to remove the cancer from my lung but surgery can’t cut it out of my head, figuratively speaking.

Fortunately Patti can’t remember so anxiety does not affect her. Whereas for me the question can a cough be just a cough haunts this whole Sandy experience.

Anyway this is about caregiving not a whining caregiver, sooooo the day after Sandy I picked up Patti discovering that her care facility had never lost power (even though they have generators) or encountered any problems. We headed out for an outing into post-apocalyptic South Central Pennsylvania who knows maybe some 'accessible' looting for early Christmas shopping. Instead we found only one road closed.

For once we caught a break. Unlike so many others whose lives have been turned upside down, Sandy spared our area. 

Patrick Leer
Caregivingly Yours, MS Caregiver @


  1. That is good that your part of the state weathered the storm pretty well, Patrick. If only you will be able to weather what lies ahead with caregiving in this new season of your life dealing with the aftermaths of your lung cancer, recovering from it, etc.

    May it be a gentle restful day today!


  2. Glad your damage from Sandy was minimal, and good luck with tomorrow's scan. You are in my thoughts and prayers!
    P.S. Can you believe that I just learned today that my mother's facility has no generators in her wing!? They use long extension cords. Fortunately, they came through the storm all right!


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