Well - it's been an intense week or so. This posting will be different from most of my blog entries in that it contains a lot of personal content - not one of my usual breezy travelogues or predictable political postings.
It's inspired in part by a note I got this morning from my cousin, Michael. Two weeks ago, while in Florida with my mother, Katy and I had a truly wonderful overnight visit with Michael and his wife, Lucy. I haven't been very close to most of my extended family over the decades, but somehow Michael and I seem to be "like kind" in a number of ways, and we really clicked. Since I got back we've been trading email, and his most recent note contained a link to a Speaking of Faith program about Alzheimer's disease. The show's host, Krista Tippit, wrote a blog entry relating her inspiration for the program . Early in her career Krista worked as a chaplain at an Alzheimer's ward, and of this experience she wrote:
Here is the great gift I could give to the men and women I met on Wooster II: unlike those who had known them long and intimately, I had no former self with which to compare them — no sense of unfolding grief, of death in slow motion. I could come to know and love them as they were, right there. And here is the greater gift they gave me: they showed me that the structure of my life — the identity and credentials by which I present myself, and a verbal intelligence with an ability to impress — were not the core of my human presence. They would never remember my name or consider my education or accomplishments. But they would know if I was a kind human being — a good listener, patient, and attentive at every level of human presence — not just by way of words, but through eye contact, compassionate silence, touch.
Katy has been trying to get this same message across to my siblings and me regarding my mother. None of us are static beings. We accept change in people when it is seen as "growth", but somehow accepting change brought on by illness is more difficult. My sisters and I have a tendency to want Mom to be the person she was for most of our lives, and we try to push her into that mold. Well, that's not who she is now, and if we want to be good companions for her, we need to let her be who she is, pay attention to that, and respond in a way that Mom will find pleasing. We need to let her find pleasure in the things she is capable of doing, and not just push her to do the things we want her to be able to do.
This doesn't mean just letting her have her way about everything. For instance, she'll be happier, and retain her relative independence longer, if she exercises her body and mind. She doesn't always want to; hell, I often don't want to exercise, either. So she has to be pushed on some things. But it's important to make sure she feels some success at these activities.
Michael's note also mentioned a recent NPR story about how pets are becoming more like members of our families. I'd heard the same story, and it had obvious resonance for me given the struggle we're having with Willin and diabetes. Medical emergencies, be they human or animal, demand rapid decisions with only limited knowledge, and I'm looking back on the events of this week with regrets. Had I known on Monday morning that I was looking at spending over $1000 on Willin's care, I might well have opted for at-home euthanasia instead of treatment. Now that the money is spent, and it appear that ongoing maintenance of Willin's diabetes will be fairly inexpensive, I'm willing to give it a try for a while - but I'm going to be asking a lot more questions about cost from here on out, and we're going to have to have a family discussion about how this affects our lives before too much longer.
Whither this blog?
When I started blogging a few years ago, at the beginning of my long trip to India, I had two goals:
- give my family and friends back home a window into the new and exotic world I was visiting, and
- scratch my long-standing itch to write.
Now, though, I have another, entirely selfish goal, inspired by Alan Dienstag's essay regarding a writing program for early stage Alzheimer's patients. He wrote:
The members of the Lifelines Writing Group have taught us about the power of writing and the nature of memory and memory loss. Their lifelines have also served as a means of closing the psychological distance between the Alzheimer's and non-Alzheimer's world. Perhaps most importantly, they have demonstrated that there is a way to give meaning to the precarious station in life in which they find themselves, and they suggest a path for others in the early stages of Alzheimer's to follow; to live with memories; to give them to others; and to preserve in some form a record of who you are, who you were, and who you wanted to be in this world before it slips away.
If I reach a point in my life where I can feel my self slipping away, I want touchstones to help me recall who I am. I've had only very limited success in my attempts to keep paper journals, but blogging I can do.
Update: I received an anonymous comment on this blog entry that I have chosen not to publish. I am in general opposed to anonymity on the Web; if you aren't willing to speak your mind under your own name, I feel no obligation to publish your comments.