Monday, August 01, 2005

a new American Gothic

Over two decades I’ve learned that some things you give up. Some things you modify, such as artificial flower gardens have become one of this caregiver’s favorites. Some things you develop. Caregiving has anchored me to a smaller piece of the world, and since Patti  consistently sees less, I’ve taken to altering that view to entertain myself. I guess as long as it doesn’t resemble the Mad Hatter’s Tea Party too much, I’m on the safer side of sane. <grin>


These pictures are from Sunday afternoon “on our patio”. Not your normal Sunday with Biff and Buffy, but then again 20 years of living with MS is more about survival than hospitality. (You’ll notice all the friends, family, and neighbors in the background <grin>)


Progression and symptoms play a MAJOR role in “teach us to care and not to care”. When the person in need reaches level of MS symptoms such as total bowel incontinence or increasing potential for spontaneous projectile vomiting, BELIEVE ME the background of home pictures will be usually empty.


I don’t have a formula but there is a relationship between TO CARE and TO SACRIFICE. And that is big problem with fading CARE in society and both our culture and pop culture. Believe me I do not want to risk being judgmental because I do not know how I would be if fate had dealt a different hand.


“I can't go back to yesterday, because I was a different person then.”

Lewis Carroll


“On our patio” is one of those ongoing ‘adjustments in disguise’. Worse case scenario, accidents are easier to clean up. On the other hand, Patti’s eye hand coordination and use of her left arm and hand have declined to a point where it would be easier on housecleaning to feed her. Yet she loves tacos and she is an adult hanging on to strings of (dignity?) maybe, and wants to feed herself. Eating outdoors eliminates the problem of making a mess and cleanup. Just brush her off – the critters of the night have it all cleaned up by morning, and they ENJOY the job. <grin>


  1. How heart warming to see that Patti is treated like a loved person and not a burden or a "thing that has problems".  And yes, I know that to be a care giver is to sacrifice.  I'm very glad that you see the deeper picture and are big enough to adjust.  I feel sad for all the friends and family in the background of those pictures.  They are missing an opportunity to  become better people.  It also makes me angry.  I don't know you and I don't know Patti but if I were near I would try to help brighten the day for both of you.

  2. ....yes we have all those friends, neighbors, family, and loved ones in the back ground, way back in the back ground.  They will always offer to come out and help, or stay with Jack while I do serious shopping or some time by myself but they just don't show.  I have learned how to handle this---with the power chair I have just insisted that Jack go with me and try this place out,etc.  He is loving the new mobility and the interesting places we go.   I seldom go alone now, and one day he might not be able to go but till then it is grab your hat......


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