Tuesday, October 31, 2006

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.


  1. I am amazed with you. I hope you have a great day. Bam

  2. What you say supports the notion that the best caregiver is the spouse because they know patient better than anyone. You can interpret much more about Patti's level of comfort better than someone who is newly hired. Some things are intuitive, I imagine. Shipping off your daughter's coat in time for winter, decorating your wife's room for the Halloween festivities, and discussing the philosophy of pain...all in a typical day. You are the man. A Gentleman. Bea

  3. i remember when the docs told my sis MS does not cause pain lol and she proved them wrong it does cause a lot of pain. glad you could share halloween with patty love the pictures


  4. Maybe Patti has the right idea of taking back the Trick or Treat bag!! Nothing like a midnight snack! LOL....

  5. ............Pain is so relative.....if the patient can't communicate the severity of the pain then the caregiver has to make that decision........if Patti's caregivers take the time and make the effort to interpret her expressions, reactions, and communications, they are exceptional.  Most facilities are so understaffed that it is pathetic!  Go for the candy Patti!!!!

  6. I agree with you, if you look, really look you even notice skin colour changes that say all's not right, but it is normally the ones closest that see this.  They seem to have a good programme of finding out.

    I like the pic with the ghosts, am glad the evening was good.  You do a great job, the best really. Rache

  7. I just read threw all the entries on this page, after not having bee to blogs all month.  This not working is eating up all my free time.

    I told my Mom recently how poorly I did on my cognitive test and she got scared.

    According to the neuro I should have total dementia.

    I told her it was job stress.


    It was too.

    Darn it.

    Praying for you and yours.


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