Beginnings

Everything has a beginning. Our life together, that is Barb's and my life together. Our life together with Mary, both while she was still on her own in Green Bay/Sister Bay and once she came to live with us. There's the beginning of the Alzheimer's and the beginning of our really providing care for Mary. And with time, some of these beginnings have become fluid, have begun to run together.

They go unrecognized or, maybe, just seem unrecognizable. Some go unrecognized by choice. Others become repressed memory, I suppose. Still, something inside me says that trying to sort through, to recognize and articulate some of our beginnings might be helpful, helpful to you, the reader, as you follow along with us on this jouney we're on, Mary, Barb, and me. And helpful to us as we continue our journey.

One of the first and most consistent questions we hear is "When did she start . . . ." When did she begin chewing her pills instead of swallowing them? Then, the follow-up, "Have you tried . . . .? Have you tried grinding them up and putting them in pudding, applesauce, to hide the disgusting bitterness of the medicine she has to swallow?

From the beginning, she's been incredibly creative in adapting to her illness, to organizing her life of diminishing skill, in an attempt to maintain as much independence as is possible; possible given the many dead ends that pop up each day.

Barb began this blog in hopes of finding some relief from the particular stress we live with. Her mother, Mary, fades further into a fog each day as Alzheimer's does its work, that is, as the disease obliterates greater and greater chunks of her brain. Mary lives with us and we are her primary caregivers. Barb invited me to blog along with her. She wondered if I might find contributing to this blog helpful, too.



Like so many things, time will tell.


This week, as I began preparing to write, I discovered our brand of stress is being considered, is in the running for inclusion in the newest DSM III. Caregivers' Syndrome is what some are calling it. The arguments for and against identifying our stress as a "Mental Illness" are the familiar arguments, "legitimatize/stigmatize." Proponents say that idenitfying it in this way will make it more real, make it legitimate and provide ways for those suffering from it to realize they need help, to find pathways to the help they need. Opponents say that naming it will label those suffering with it and push them deeper into the isolation that accerbates the suffering they experience. I'm not sure I want to write about identifying or naming, about stimatizing or legitimizing, about opponents or proponents. Such arguments don't interest me the way they may have once.



I do know, for me, this is a beginning, writing to Mary in this format. Last year, I worked with a writing coach for a while. She suggested that I write my letters to Mary and put them aside to sort through and edit, to review and revisit later. That approach has not been very helpful.

So, I'll begin anew here, to make my contributions here as letters to Mary - for myself. And we'll see how that goes.



welcome to our journey,
jes