Saturday, January 05, 2013

Care cannot be found in a Hallmark store

Writing on Patti’s wall calendar after an outing last night still has that freshness of well ... the first week of the year. J

While in 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.

Once I 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.

Back in 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.

The care 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.

This 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.

For most 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.

Care cannot 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. 
“And in the end … The love you take … Is equal to the love you make.” (The Beatles)
Patrick Leer
Caregivingly Yours, MS Caregiver @


  1. Patrick, who can understand any of this? I think you've lived your life in an amazingingly honorable and loving way. And, yes, Hallmark card platitudes are inadequate, but sometimes they 're all we got to facilitate expression. In the end, though, your Beatles quote says it all.

    1. thank you Judy though I must disagree about 'Hallmark card platitudes are sometimes all we've got' - there is an inspiring poet named Judy who shares her poetry at Peace Be With You not only is she a poet but challenged with her own MS she is also a spouse caregiver for her husband ... her words have brought comfort to us through the years and best of all, often laughs to Patti - thank you

  2. Yes being a parent to a teen is so tough....but we survive those years, hopefully. Hallmark card?? I wish there was an easy answer. I hope you feel better


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