Sunday, March 25, 2012

sharing the news – do you glow?

"Families may be one accident, injury, or diagnosis away from bankruptcy." U.S. Senator Sheldon Whitehouse (D-RI)
As EOB (explanation of benefits) statements began to appear from ever more sophisticated and expensive tests I realized cancer was going to be expensive even with medical insurance. Our family resources had already been swamped living with a quarter century of one major diagnosis, Multiple Sclerosis. Can any family survive two?

Blinded by MS tunnel vision I had never noticed how many stories in newspapers recounted the collateral damage of cancer such as a family hosting a fundraiser at a local church to try and raise $6,000 just to pay their yearly medical insurance deductibles for their son’s cancer treatment.

Why was I keeping it all to myself? - Almost 15 years ago my Dad died of Pancreatic Cancer.  He chose to keep it hidden as long as possible, dying less than a month after friends and family were told. Like father like son I originally chose to keep it secret.

Keep in mind I physically felt great. Caregiving was a comfortable masquerade focused on Patti. Glancing back at this blog from that time, I was writing about outings with Patti and even - exercise, fitness, caregiving for Multiple Sclerosis.

More importantly - what about Patti in the now, today?

Megan, our daughter, brought Patti home from her care facility for dinner earlier this week. She had not seen me since our outing the previous week before surgery. Though Patti’s parents had visited and ‘broke the news’ the night before, Patti remembered nothing. In response to Megan telling her while driving she only asked "he's not dead?" and when I personally recapped the story again later, she focused on x-rays and radioactive scans, asking only "do you glow?" J

When questioned about me the next day, after two days of memory reinforcement, she responded "I think he had lung surgery".

I remember sharing Patti’s diagnosis of Multiple Sclerosis, almost 27 years ago, surrounding her like a sentinel. Decades of MS has robbed Patti of physical and mental abilities. Long term caregivers will have no caregivers. That's just the way it is.

(originally published in Caregivingly Yours blog March 25, 2012)

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