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.
on Patti’s wall calendar after an outing last night still has that freshness of
well ... the first week of the year. J
the other universe of my personal day planner I have spent the better part of the
first three working days of the year on the phone, on hold, faxing or waiting
for call backs regarding health insurance. Long story made short at one point
or another we have ranged from no health insurance through two health and
prescription plans and cards each … to eureka! the way it’s supposed to be.
calculated that I had spent over 1,000 “billable” hours on the phone, on hold,
filling out forms, correcting billing errors, and so on related to Patti’s
health insurance and prescription plan … and that was just the first year of
the care facility era of Multiple Sclerosis - in the preceding homecare era,
the luxury of actually keeping a record of time was impossible.
those homecare years I was also somehow juggling basically single parenting our
daughter. Ever been a soccer mom? PTA President? T-Ball Coach? Gone clothes
shopping for a girl as a guy? Help with homework? Hug away tears? … Plus when
MS knocks Mom out of the picture a Dad’s got to make the time to teach a daughter the intangibles of life like how to play in a waterfall and climb a mountain to pet a tadpole. …Forget day
planners no parent can count those kind of hours.
facility era for our family began just a month before our daughter’s 16th
birthday and if you think the teenage years involve any less parenting time,
you obviously have not raised a teenager.
past year, if my life were fiction it could be criticized as ‘jumping the shark’
with my diagnosis of lung cancer. Unfortunately it’s not fiction though
consequently dotting the i’s and crossing the t’s of lung cancer has taken more
than a shark bite out of what non-existent time existed.
long term caregivers I know I’m preaching to the choir but for ‘others’ who
measure success in life by tangibles, can you begin to see how quickly long term
caregiving changes your life in both the now and tomorrow. This cumulative time
has to come from somewhere in your life.
be found in a Hallmark store, most days neither a “get well soon” card nor a “sympathy”
card will do. It’s all about the time you make.
the end … The love you take … Is equal to the love you make.” (The Beatles)