Sunday, February 21, 2010

WE laugh in the NOW. I remember for us both.

Pondering the dichotomy of change and caregiving over morning coffee a robin alighted on the snow outside my window. Omens are too weird over the first cup of coffee. I left Stardust to monitor nature’s contradictions while I took my head for a walk.
A month ago I shared in an entry, Whac-a-problem, about a change in Patti’s room assignment at her care facility.

While the change was a week of angst for me, Patti on the other hand summed up the transition, “What room?”

Why does it rub me wrong when a friend shares how much insight they have gained into cognitive decline of a 50 something woman from a fictional novel? Is fiction more ‘understandable’ than real life? Maybe it is.

We have been living a battle with cognitive decline, memory loss, and dementia-like symptoms of Multiple Sclerosis for almost 10 years. Real life is not only exhausting but long, slow and filled with wildcards. It is not as easy to gleam information from.

I think when she cannot. This role I do not enjoy. You pressure yourself so much more when required to think for another.

As a caregiver I replace and keep replacing that which is lost. Is it sad if Patti cannot remember some outing or activity shortly after it happened? I cannot answer for her. I simply conjure up another ‘now’.

‘We’ laugh in the NOW. I remember for us ‘both’.

Tell me grasshopper which is more important, the life we live or the life we remember? 

 Caregiver's Perspective: Multiple Sclerosis and Cognition 

Caregivingly Yours, Patrick Leer
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  1. The life we live. I can totally relate to this one. My mother would not know I had spent the afternoon with her even five minutes after I left.But I certainly remembered how much fun we had feeding the ducks. That's when I became a believer in "live in the present" - that's what counts.

  2. Patrick - wow. Julie is so right, this is a beautiful post. And, although I don't deal with cognitive issues with Skip, I can relate to the losses and challenges you feel. I am continuously impressed by your approach to things.

  3. I think the life we live versus the life we remember; too many people get stuck sometimes in the past and their memories, they forget to live and enjoy the lives they have right now. But I know it has to be hard to think for another person; there would be a lot of stress and second guessing wondering what is the best for your loved one

    hard balance I'm sure you struggle with every moment of every day Patrick (and let a lot of times you do it with so much humor, that truly is a gift)


  4. All the moments make our life. Past, present, future---remembering is highly overrated. Kiss her now, that is what matters.

  5. It's a lot like child rearing in reverse. Instead of teaching new skills and deciding when they are ready to solo, we are deciding when they can no longer solo and assisting them into dependency. It's hard, but we need to take equal pride when this process is well done.

  6. As one who is slowly losing herself....the life we live right now. Tomorrow may never come sweet NOW. Laugh NOW>

    Laugh later when you remember. Always smile in your heart.

  7. Beautiful post. I remember many many laughs in the "now" with my dad, who lived with Parkinson's. Please keep writing, we need to read this stuff.

    Robin in NS


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