This is the story of Pam and John; she in her early 50’s and John is 62. Pam is a college professor. John taught at a local community college until diagnosed with Parkinson’s in March 2008, then Lewy Body Dementia in April.


Tuesday, November 11, 2008


I really like 'elderly lady in training's comment on my last post. She writes that the pitfalls of helping include:

- being resented for giving help that's needed but not wanted

- getting run ragged trying to give help that is wanted but not needed

- wasting everyone's time by providing help which is neither wanted nor needed (although it never seems so at the time).

It is so hard to draw the line of the help that is wanted but not needed.

I also like the idea of being an elderly lady in training. I feel like I'm having to learn early lessons about letting go of control over my life that most people face at the end of life. And since my grandmother and her sister died of Alzheimer's the long slow way I do keep asking myself what would I want.

I'm thinking a lot about letting go of control and letting go of validating myself by what I achieve (the program I have spent the last five years building may get killed because of budget cuts). There isn't much sense of achievement available in caregiving, it is more like a losing battle against the forces of entropy.

1 comment:

Anonymous said...

not sure how I found your blog, but I am enjoying it, and some of your links as well. I am a nurse and therapist who works with elders at home primarily helping to arrange and coordinate services and provide support to elders and families. I, too, often feel like an 'elderly lady in training' - a great phrase. What you share helps me to have a glimpse of what dementia is like for the caregiver, and I am trying to learn ways to be more effective at giving help that is both needed and wanted, and not generating hot air and confusion trying to give care that is not wanted or not needed....
take care of yourself, as best you can...