Monday, July 05, 2010

a 4th of July adventure

July 4th was spent in a caregiving state of mind. Independence? Dependence? Why do they seem to mean different things whether you are pontificating or lifting?

This little guy seems a bit concerned while holding a hot dog in a park while his Dad holds his pinwheel and his Mom laughs. Taken in the 1920’s, I wonder what was on the boy’s mind who would become my father.

Old photo project and morning coffee aside, it was time to help get J & T on the road; teen autism can get over-focused on schedules and travel but rarely of a helping hand nature. Of course, that can be ‘teen’ as much as autism.

Then on to Multiple Sclerosis caregiving.  Patti’s folks host a traditional family style picnic and backyard fireworks with so many relatives that Patti forgets faster than she recognizes. MS cognitive, memory loss, and visual impairment symptoms are somewhat like attending without your 3D glasses. 

We experimented with a later arrival hoping Patti could make it past dark considering MS fatigue, July heat and Uhthoff's phenomenon. Later was actually a blessing for MS related dysphagia with less guests equaling less distractions and less well-intended people getting/giving her food, many that may be unaware of her eating, swallowing, and choking challenges.

Backyard fireworks were both fun and everything you are warned about. Unexpectedly a 10 shot aerial repeater intended to propel multiple, repetitive pyrotechnic charges hundreds of feet into the air tipped over after 3 launches. Instead of skyward,  shells whizzed by and around ricocheting off whatever and surrounding us in exploding colors, noises, effects, and smoke.

Surreally swinging a board through colored smoke at anything that flew toward Patti, I saw no one except myself and the two wheelchair occupants. You just cannot trust the two legged. The able bodied had run for cover!

It is not exactly Star Spangled Banner material but batting at rockets, I yelled to Patti. “Are you OK?” Through the exploding colors and smoke she calmly responds, “Yeah! … Can’t I just get a cigarette?” 

God bless America!

Caregivingly Yours, Patrick Leer 

1 comment:

  1. and God bless you Patrick for helping T and J with their travel arrangements and helping Patti enjoy a Fourth with her family/friends (albeit perhaps not in the safest of environments). I would imagine you knew she was okay when she asked for a cigarette and did it ever so calmly.

    I'm thinking it was a good Fourth for you all?



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