Sharing the trial and error learned lessons of a MS spouse caregiver / carer about family, home care, and transition to the care facility era from 23 years of living with Multiple Sclerosis as a family ... a ‘warts and all’ picture of living with MS.
the latest issue of NMSS Momentum I was intrigued by their cover article “Not Your Friend’s MS”.
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”?
led to reminiscing …
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 Caregivingof Georgia Southwestern State University.
Mitchell Kowalski and Zane Kotker
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.
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”.
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.