Monday, November 12, 2012

Not Your Friend’s MS Caregiving

Reading the latest issue of NMSS Momentum I was intrigued by their cover article “Not Your Friend’s MS”.

I found myself reflecting on how many Multiple Sclerosis spouse caregivers, family and or friends who actually provide care or one day may need to provide care are not affected similarly by the phenomena of “Not Your Friend’s MS Caregiving”?

Reflecting led to reminiscing …

Rosalynn Carter
Decades ago my Dad gave me a copy of “Helping Yourself Help Others” by former First Lady, Rosalynn Carter who first became a caregiver as a teenager helping her Mom as her Dad died of leukemia. I will always remember reading for the first time, "There are only four kinds of people in this world: those who have been caregivers, those who currently are caregivers, those who will be caregivers, and those who will need caregivers". … Decades later Rosalynn Carter remains involved as President of Board of Directors of the Rosalynn Carter Institute for Caregiving of Georgia Southwestern State University.

Mitchell Kowalski and Zane Kotker 
Around the same time, misfiled on a library shelf I found a copy of “Mainstay: for the Well Spouse of the Chronically Ill” written in hindsight by a MS spouse caregiver, Zane Kotker under the nom de plume, Maggie Strong. Most importantly to me at the time, she wrote about caregiving for severe and progressing MS until her husband’s death … ‘not your friend’s (mild) MS’ as portrayed everywhere else in MS publications of the time. Today Zane Kotker continues her writing career but as a fiction author under her own name living in the Pioneer Valley of Massachusetts. That original 80’s book “Mainstay” spawned what today is known as the Well Spouse Association.  

These two long ago, pre Internet advocates for caregivers back when I was starting are good examples of the range of philosophy of “not your friend’s caregiver”.

Neither is right or wrong! Yet in the beginning, who among us does not search for or want to be inspired by the ‘right plan’ for the future. That is until unpredictable twists and turns of fate leave us all … living the ‘best of possible’ lives.
Patrick Leer
BLOGS:
Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

4 comments:

  1. And then there is my situation, both spouses caregivers for the other, both declining with age, both now in asst living home, still helping each other survive to live, love, and laugh another day. I LOVE Carter!

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  2. Just as each case of MS is different, so, too, are our caregivers. While yours became a full-time issue very quickly, I'm progressing (I prefer the term declining) at a much slower pace. So, my husband has time to catch up.
    Peace,
    Muff

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    Replies
    1. though I personally have no frame of reference I have often wondered if slow and steady is any easier to cope with from a caregiver's perspective than having the roof fall in on you

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