Caregiving: shoes and ships and sealing wax

"The time has come," the Walrus said, "to talk of many things: Of shoes and ships and sealing wax - - of cabbages and kings." from “Through The Looking Glass” by Lewis Carroll

 

Juggling spousal caregiving and basically single parenting there are days when Lewis Carroll’s walrus could easily become my imaginary friend. <grin>

 

Freshmen college students pack in August for the school year ahead, a winter coat is the last thing on their mind. Yesterday began by escorting our daughter’s full length winter coat (fresh from the dry cleaners) into a UPS Store. Within minutes it was fitted with the proper box, carefully packed, sealed and ready to ride a brown truck to a Halloween delivery. … Temperatures, today, have warmed almost 30 degrees; you may want to try this. <grin>

 

By evening I was transforming Patti’s room at her care facility with disco lighting and helping her with their Trick or Treat program for children of staff and families of residents. Progression of cognitive dysfunction symptoms impairs her ability to consistently process the reasoning involved. Unassisted, Patti could just as easily take an offered treat bag “mis-thinking” it was being offered to her. <grin> You can imagine the shock to a young goblin if “the lady” took their Trick or Treat bag.

 

The night ended with a chat with the director of nursing about the impact of progression of cognitive dysfunction on Patti’s personal care pain management plan. What was Patti capable of recognizing?

 

Somewhat like the proverbial question, if a tree falls in a forest and nobody’s around, does it make a sound? … If Patti hurts but the brain does not recognize it, what happens to the pain?

 

MS is about the brain short circuiting communication with the rest of the body. Can anyone depend on Patti to successfully recognize and communicate her own discomfort or pain? Increasing cognitive dysfunction magnifies this care dilemma.

 

I was impressed and comfortable with their structured combination of both a verbal numerical and a pain assessment scale. Or in English, a combination of simply asking Patti, with assessment of observations such as negative vocalizations, facial expressions, body language, or consolability.

 

Minus the fancy medical terminology frankly I do the same thing, I “interpret” Patti. After all, I have 20+ years of knowledge as her caregiver spouse to draw on.  

 

All in all, another of those ‘shoes and ships and sealing wax’ kind of days of trying to live with MS as a family.