Thursday, August 18, 2011

can I depend on you / planning for life with MS care giving

Can I depend on you? / Can you depend on me?
When your world is turned upside down who thinks about plans? The person diagnosed with MS has a mountain of emotions to suddenly deal with. “the call”

The people around them have a parallel world of reactions confounded by invisible symptoms and invisible hurdles.

From the earliest symptoms through diagnosis of Multiple Sclerosis and beyond it may be more like a dance than stages of a denial acceptance equation

Everyone brings who they are to the moment. With one basic question, can I depend on you? / can you depend on me?

Whether one chooses to go it alone and create their own support network or within a family unit, the dance begins. Somehow each must not only learn but learn to move together.

Caring can push too hard or equally react too slow. Pushed away in the moment, it’s equally difficult to learn not to sulk as it is to try again.

Giving someone ‘space’ sounds easy until you create distance between you.

In the beginning it may seem as impossible as respecting boundaries without borders.

Complicating it all is that MS in the beginning does not look ominous. When you look ‘mahvelous dahling’ people have a problem understanding your diagnosis much less anxiety.

Also our attention span for caring is definitely short term. Hallmark sells ‘get well SOON’ cards not ‘living with’ cards.  MS on the other hand is about a commitment of decades not days.

MS symptoms may change and progress through the years increasing needs while abilities and resources of those who care decrease, butterfly effect MS caregiving.

Can I depend on you? … In the beginning, there is more going on in everybody’s heads than is actually happening. Like any first dance there will be those awkward moments of hand placement and you most certainly will step on a few toes. … Can you depend on me? 
“You can’t depend on your judgment when your imagination is out of focus” Mark Twain

Caregivingly Yours, Patrick Leer 
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  1. Peace Be With You Judy

    This is an amazing post, Patrick. So on the mark.


  2. Thanks Judy! Writing it I was concerned this might be a detour in discussing "planning" but the more I looked at it the more it seemed to hold answers.

  3. "Hallmark sells 'get well soon' cards, not 'living with' cards." Boy, ain't that the truth! Even my long-term disability insurance company sends me forms every three months, apparently expecting that sooner or later I'll get over this and go back to work. But I'm grateful to have the insurance, so I fill out the forms and send them back. Dealing with a disability is always an adventure!

  4. I love this entry, I wonder how many really have people they can depend on. I am lucky I found one, Patty is lucky she found you.

  5. zoomdoggies - every three months!!! and I bemoan filling out Patti's annual paperwork. At least they are annoyingly optimistic shadows on the adventure.

    Julie - for some reason I was thinking I could come up with some 'objective' planning formula, yet the truth is 'depending on someone' while so damn subjective seems increasingly pivotal.


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