Tuesday, March 29, 2005

Life has to have unknowns

Home for the holidays and at family gatherings with extended family and friends, caregiver antennae has to be on high. Unlike a care facility the safety net is missing, and Patti is not always what she seems to be.

Playing with the camera over Easter weekend, I captured an interesting sequence. The following pictures are taken only seconds apart. They catch facial expressions related to symptoms of attention span, focus, & awareness fairly well and demonstrate how difficult those symptoms make it for someone to ‘read’ Patti or interact.

Patti was watching TV while I was making lunch. I had asked her, “What are you watching?” The pictures catch her attempting to process the question and answer. She was unable to offer a response. (Remember the answer is on the screen 2 ft away and in panel 3 she even glances in the direction of the screen.)

The sequence ends as often with her moving closer and looking at me as if I just materialized out of thin air. (As a fan of Grade B horror films this used to unnerve me and I would always turn to look behind me. ) 

In some situations she just forgets. In the worst case scenario, frustration boils over into a disruptive outburst of lability. 

Like most MS symptoms this is inconsistent and therein is the problem in itself. Someone having a lucid conversation believing Patti appears ‘fine’ could leave Patti unattended. Unattended at Patti’s level of disability is “at risk”. In the blink of an eye symptoms can change. The Patti that appeared lucid and conversational can instantly become as confused and unaware of her surroundings as when I asked her the simple question,”what are you watching.”  

As a caregiver you don't want to loom over a person and yet you want to encourage interaction. I long ago got tired of people talking to Patti through me like she needed a translator. I find the best I can do is just keep the caregiver antennae on full power. Life has to have unknowns.


  1. Patrick you are such a special person and I am always in awe at how you have handled all that you have gone through.  I can only pray I have half your strength and courage.

  2. You always offer such insite into  the real situation.  Anyone outside the immediate space just doesn't understand..Someone close to us said they would take care of Jack, etc., but they call and say they are coming and then don't and never call and say why or what happened.  That kind of irresponsible behavior sends up warning flags and lights flash.  You have to be alert, responsible, and even thinking ahead all the time.  I think the only way you can describe it as " you are no longer yourself but two people with one alert system"...at least that makes sense to me.
    Be of good cheer..she is so aware that you love and care .

  3. You are one amazing person.


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