Friday, August 12, 2011

game plan / planning for life with MS care giving

Life is what happens while you are busy making other plans. John Lennon
Patti’s neurologist first raised the issue of ‘more’ than homecare, the pre-dawn of the care facility era.

Ten years earlier when I asked this same guy about moving to a one story house to facilitate living with Multiple Sclerosis he had said, “Oh! I wouldn’t do that.”

OK, maybe neurologists are not psychic and not financial planners but they are ‘first responders’ to living with MS.

Over those ten years we seemed to live getting one step ahead only to fall two steps behind always remodeling and adapting. What if – we had originally and simply moved to a one story house?

Of course this is ‘retrospective’ planning - certainly we would have had less stress and more money – yet life does not include any ‘do-overs’. You get one chance.

In as sense you are torn between hope driven living or worst case scenario planning. Yet the simple truth is that when the resulting plan is driven by reaction to symptoms and/or progression then reality ricochets.

Complicating any formula for planning for life with MS is that every story is unique. Some people with MS climb mountains, some cannot even get out of bed, most are somewhere in between.

Living with MS is also often about the families that surround and are part of each story – or not part. Ripples affect either way.

Believe me there have been more times than not that I have wondered if planning is an illusion or a delusion.

Regardless you have to come up with something and then MS does what it wants – the proverbial “busted play” of American football. Mesmerizing when it works … ‘what were they thinking?’ when it does not.

Caregivingly Yours, Patrick Leer 
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  1. It's impossible to plan for every possible scenario even though we try! It's a day-to-day adapting, hoping for the best yet trying to plan for the worse. I've watched by closest friend in the world cope with her MS and while she worries that as it takes its hold on her, her husband of 25 years will leave. She feels as if an anvil hangs over her head. As a friend I do not know what to say to give her assurance.

  2. "olkhdan" for what it's worth, worries in my experience seem to have no better or worse success than plans - and while worries are sure understandable, they do consume a lot more emotional energy.

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  4. Oh that post speaks SO MUCH!! If only you could get really good professional advice at the time that you needed it. But let's be honest, they don't know much either, and they can't really advise you. In hindsight, you could not plan. You just had to deal with stuff as it happened. Sad really. Same with me and my situation.

  5. Thanks Barb! It is a helluva diagnosis to cope with and all the making it up as we go along is maddening.


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