There is smoke in the air again today, so instead of the patio I am comfortably settled on the living room couch. Since we've hardly used this room all summer it feels odd and is a distinct reminder that winter, and use of the fireplace, aren't far off. The week ahead promises to be rainy, which adds to the sense of summer's end.
While I write Ray is in the "back room" watching a rerun of a bike race in Spain. Both of us are enjoying this day without plans because the week has been unusually busy. Tuesday it was the bath aide and a sitter, so I could run errands for three hours. Wednesday it was two women to talk about the caregiver study I agreed to participate in (my contribution to science). Thursday brought a speech therapist to check on Ray's swallowing (one of the symptoms of Lewy body). Among other things she suggested thickened water. Ick. Friday was the bath aide again, plus a PT to help with transfers. She watched as I helped Ray move from chair to couch, and said my technique was excellent. I felt like a kid getting an unexpected A.
All this attention to illness is not unexpected but it lays bare how much our life is consumed by it. As Ray grows less able to care for himself I take up the slack, but while I grow more intimately aware of his most basic needs, I understand less and less of his thinking. The two issues are on divergent paths and the distances between them grow daily. Communication suffers, of course, but I have learned to shorten my sentences, to cease sharing complicated topics, to hear silence in answer to questions. Instead of talking to Ray I talk out loud to myself, and sometimes wonder if I too am not losing all sense.
Next week the every-other-week nurse will return, as will the bath aide and the PT—this time to work on car transfers. All bring a whiff of the outside world with them along with their help and conversation. I will be here, chopping wood and carrying water, and living in the now with Ray and the cat. It is not an exciting life, but it is not to be disparaged. It is the perfect life for me, at this moment, now.
3 comments:
I can identify completely with your life as you are leading it at this time. Mine with Lee was nearly the same, except we didn't have outside help until the last week, because we didn't know how quickly he would decline. During those last months we reminisced, or rather, I reminisced and he listened and said, "Did we really do that." I was grateful that there were so many things to bring up, as I know you must be. He thought the things we did were wonderful as I told them, and he wished he could remember them. It is a sometimes overwhelming responsibility to be the keeper of the memories.
I know you are doing a wonderful job of care taking. In its intimacy and intensity, it is a great privilege to be the one to take care of a man loved so much for so long. My thoughts and heart are with the two of you as summer fades into fall. I am trying to imagine a season that doesn't have Lee in it. Be of good heart, dear friend.
Your acceptance of your life as it changes is refreshing. As my cousin Chet said in a letter to me announcing that he has Lewy Bodies, "This is what is supposed to happen: I accept it." What a brave statement. And during the"in between times" when you just want to scream (I imagine it is inevitable), that is supposed to happen too. I'm so glad that you're writing about it. We need to hear it. We can learn from it too.
I love what Ronalee said: "it is a great privilege to be the one to take care of a man loved so much for so long." I especially felt that when I took care of Larry, my accompanist in New York, when he was dying of AIDS in the 80's. He wasn't going to get better, and my job was to hold his hand and help him with his life's transition. It was a gift.
Love to you, and keep writing. xoxoxo Sue
Thank you Ronalee for your wonderful comment. It is both painful and amazing to do this job. My wish for you is a contented fall as you face the world through altered vision, and move ahead with grace. It will come.
And thank you Sue; your comments always are welcome. I remember your care of Larry, and the worry and love you expressed. You're right, of course, it is a gift—but a hard one to accept sometimes.
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