Sunday, March 25, 2012

when caregivers get sick – do you glow?

"Families may be one accident, injury, ordiagnosis away from bankruptcy." U.S. Senator Sheldon Whitehouse (D-RI)
As EOB (explanation of benefits) statements beganto appear from ever more sophisticated and expensive tests I realized cancerwas going to be expensive even with medical insurance. Our family resources hadalready 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 noticedhow many stories in newspapers recounted the collateral damage of cancer suchas a family hosting a fundraiser at a local church to try and raise $6,000 justto pay their yearly medical insurance deductibles for their son’s cancertreatment.

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

Keep in mind I physically felt great. Caregivingwas a comfortable masquerade focused on Patti. Glancing back at this blog fromthat 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 fromher care facility for dinner earlier this week. She had not seen me since ourouting the previous week before surgery. Though Patti’s parents had visited and‘broke the news’ the night before, Patti remembered nothing. In response toMegan telling her while driving she only asked "he's not dead?" andwhen I personally recapped the story again later, she focused on x-rays and radioactivescans, asking only "do you glow?" J

When questioned about me the next day, aftertwo days of memory reinforcement, she responded "I think he had lungsurgery".

I remember sharing Patti’s diagnosis ofMultiple Sclerosis, almost 27 years ago, surrounding her like a sentinel. Decadesof MS has robbed Patti of physical and mental abilities. Long term caregivers willhave no caregivers. That's just the way it is.
(to be continued … since its inception Caregivingly Yours entrieshave courteously not exceeded 350 words)
continued ...
when caregivers get sick – man plans, God laughs Mar 26

from caregiving to survivorship Mar 28

when caregivers get sick - lung cancer Mar 24

Caregivingly Yours, Patrick Leer