fading red capes

Dusting my dresser I lifted my ‘action figure’ and found myself reminiscing briefly over the past quarter century of Multiple Sclerosis spouse caregiving.  

Decades ago my co-workers gave me this action figure when I finally had to abandon juggling working full-time, spouse caregiving, and basically single parenting.

Multi-tasking before it was even an overused word meant leaving work early, racing home to pick up Patti from the bathroom floor, shower and dress her, clean up the smeared excrement and urine from the bathroom, spray the house, and open windows before the elementary school bus arrived with our daughter and her friends. … I had to simply ‘find a way’ to juggle all the lives I was responsible for  -- that’s what MS home caregiving was.

Later when the care facility era began I felt ‘defeated’ at first before finding renewal in the teamwork era. I committed myself to 3.5 outings per week on average, followed by preparing and transferring Patti from her wheelchair to bed by myself using the bear hug one person unassisted transfer. We never used a lift in homecare and in my mind remaining part of her bedtime routine half the nights of every week keeps the care facility an ‘era’ rather than an ‘end’.

Recently I guestimated I have pushed Patti’s wheelchair over 5,000 miles (8,000 kilometers) over the years. If I had to do the same with “lifting” I would guestimate a total of 25 tons (22,700 kg) of one person unassisted transfers over just one year in the care facility era. Each home care year was ‘exponentially’ more. When caring for a non-ambulatory person, caring is about lifting hundreds of tons over the decades. Whatever ... it's a lot more than a warranty on any commercial lift.

This year my lung cancer diagnosis and surgery has been my own personal kryptonite and it’s annoying me. My transferring Patti to bed myself has dropped 10% and I ‘feel’ those manual transfers in my muscles affected by lung cancer surgery …

Why can’t life be like a comic book where caregivers’ red capes never fade and instead it’s the disease that weakens?

Patrick Leer

BLOGS:

Caregivingly Yours, MS Caregiver @ http://caregivinglyyours.blogspot.com/

My Lung Cancer Odyssey @ http://lung-cancer-survivor.blogspot.com/

multiple sclerosis caregiving nursing home care care giving