Yesterday I ran a quick errand downtown early in the morning, and passed a big crowd of people gathering on the town common. There were tents, and music, and purple banners – I’d forgotten it was the Walk to End Alzheimer’s fundraiser day. I vaguely remembered seeing people walking through town a year or two ago with purple t-shirts on, and it took some close gawking to figure out what their cause was. At the time, I wasn’t very interested in it.
This year, though, I realized I longed to park and run over and surround myself with people who really understood what our lives are like these days. I wanted to walk through the streets with a purple tshirt on, and carry a banner with the word “Alzheimer’s” on it. That group gathering on the common was my demographic, my people – no longer some strangers.
But I was on a ten-minute errand, and couldn’t imagine what to tell J – Uh, honey, I am going to walk with the Alzheimer Association ….will be back in a couple of hours. No, I couldn’t be that open with her, nor would I feel comfortable leaving her for that long. But I will find a way to participate next year! It will involve arranging someone to be with J while I’m out, unless she has a miraculous change of mind and accepts the diagnosis and agrees to come with me.
As I’ve said before, probably the toughest part of this life we are living now is dancing around the diagnosis. It keeps us from working on the same side or pulling together. It’s hard to know what to do about this, except be kind and present.
J has had some relatively minor somatic complaints this week which have given her distress way beyond what she would have experienced a few years ago. Something about the loss of the “big picture”, the flip side of being in the present – whatever’s happening in the present is really all there is. What helps is having a pleasant activitiy to engage in, but it’s hard to guess what J is going to be up for any given day. Going out to lunch with a sister, a half hour’s drive away, can be most welcome, or it can be daunting for J with the prospect of “that long a car ride”…some days it seems fine, others, impossible.
On a brighter note, (fortunately, there is usually a brighter note somewhere…) when R came last week it was very pleasant for all of us, with J remarking after she left, “I like her very much”, and going on to discuss with me how useful it might be to have R in the wing for various times we might need her. This was on the heels of my having asked R to tell us more about how she works with other clients, and she graciously described a number of types of companion activities she does. So, this is heartening – although it can change on a dime, even having J on board for a little whiile with the companion idea was wonderful.