Musings

This Alzheimer's BLOG receives between 50 and 100 hits a day. Out of some 36,000 hits in the four years since its beginning, there have been 265 comments for a .7% reply rate. But you know what, comments are not expected and notoriously absent when anyone who is a blogger is asked about their experience with comments.

As you know, I do not write for the comments. I write to process my grief and my joy, I write to share our situation with friends and family, I write in case my experiences and observations and insights might help others who are grieving.

We all grief when someone we love is experiencing any terminal, incurable illness. But the way Alzheimer's presents itself is more insidious than only a few other illnesses out there and therefore more painful for both the ones ill and the ones loving and caring for those ill.

Periodically I will run into someone who follows this BLOG and they will tell me how much it means to them or what an inspirational role model I am. This happened on Friday when I was at the Lyric Opera of Chicago's costume sale and I ran into one of the women who sings in the chorus. (Thanks CL!) We exchanged no fewer than three meaningful hugs :-)

Again, while I do not write for the celebrity, and while I know I am doing a good job caring for Gregory, it does make me feel good to hear from others who agree. Being a caregiver for someone you love so much is a heavy, lonely occupation and sharing that love with others and hearing their message helps me to feel lighter!

P.S. Over the last 15 or so years, being in 20 or so operas; many of the people at the opera house have become acquaintances, friends, and family at various levels. I appreciate and value them. I keep up with many of them via Facebook. I haven't been able to be in any operas for three or four years as I could not leave Gregory alone but now that he is safely ensconced at The Lieberman Center, I hope to get cast in an opera this season, or maybe next.

Theater Follow Up

RZ, in response to yesterdays post, wrote:

i think you were reading my mind, i was trying to figure out a way to suggest maybe greg can no longer go to such events, i was very attuned to both him and you and i know you want to give greg every opportunity to participate in life but it seems like its getting to be where the focus is getting smaller, i talked with MS a bit and had planned on saying something. oh michael it is just shit, im so sad and at the same time know you make his world continue to be special. much love to you both RZ

My Reply via e-mail:

Or maybe you were reading my mind:-) I think the unusualness of the swimming pool etc and maybe a "bad" day is what we were experiencing. Besides the "focus" I have never seen Gregory that tired at a performance. In traditional settings he still seems to do well enough but the Pool was definitely too much ... for him and for me to monitor. 

When we go to the Lyric or Goodman it still seems to be OK and I always make sure we sit on the aisle. That seems to help. Also when it is just the two of us and I can give all my attention to him instead of visiting with friends, it also seems to go better for him. 

I have been aware for a while that this "skill" is now in the "comes and goes" phase. What happens is that there is a period of time when he still does well enough that change is not necessary, then I begin to be more supportive, then the skill returns, then it leaves, and finally I decide that it is time to discontinue that particular activity. 

One of my gauges for future theater decisions is also "does it disturb those around us." At the pool I think it did but at other venues on other occasions it doesn't seem to. So at this point I will probably not take Gregory to theater with friends but he and I will continue to go when it is just the two of us. He enjoys the experience and the music so much that it is worth my continued efforts (again as long as it does not disturb those around us.) We are, however, certainly on the path to theatrical extinction. 

Thanks for your feedback, your support, your love. And yes ... IT IS JUST SHIT!

Since you mentioned MS, I copied him so he could be part of the conversation. Thanks to both of you.

Love ya,

m

P.S. While I was at the computer writing this, Gregory finished shaving and was getting dressed. I glanced over and saw that his underpants, undershirt, and sweatshirt were on so far ... and all three were backwards. Now I wish I hadn't intervened and waited instead to see if he would have gotten his sweatpants on backwards also. But that would have been mean :-) In the past, I have told him, "Since you get your clothes on backwards so often, why don't you just do it wrong. Then they'll be on right." He laughs. I smile (and die.)