Today was the Walk to End Alzheimer's. It was a beautiful morning here in SW Virginia and we had a nice little group for
Alma's team.
Alma did fairly well considering things were quite hectic and overwhelming. At one point, she said, "oh no, even the children get Alzheimer's!", as she was noticing all of the kids running around. I thought once we started walking, she would be happy to be moving but her mood seemed to become darker the farther we got into the walk. When we got home, I asked her if she had a nice time and she replied in her stern voice "No, this is not a nice time. I have Alzheimer's and it's serious!” I am thinking she was feeling self conscious and taking her on this walk was probably just a greater reminder of her struggles with this disease.
Alma has been with us for a year now. I have shared most of this already so I apologize for the repetition. When
Alma came to live with us, my relationship with her was strained. I struggled greatly with patience and understanding when she lashed out at me. There have been many times when I’ve had to remove myself because I could not discern the difference between the logical understanding that
Alma has little or no control over what she says and does and my emotional reaction of anger and hurt feelings. I still have those moments but they come less and less as my understanding of the disease has grown. I feel incredibly sad for her as I watch the seemingly never ending struggle between awareness and confusion. As hard as it is to watch this, I maintain that I am grateful for this experience. There have been so many rich moments and that is what keeps my family going. I’m having a hard time saying what I want to say so I would like to share a passage that Brene Brown, PhD posted on her blog a couple of weeks ago. It is from the “Velveteen Rabbit” and I found it to be an excellent representation of what this whole time with
Alma has give to all of us.
"Real isn't how you are made," said the Skin Horse. "It's a thing that happens to you. When a child loves you for a long, long time, not just to play with, but really loves you, then you become Real."
"Does it hurt?" asked the Rabbit.
"Sometimes," said the Skin Horse, for he was always truthful. "When you are Real, you don't mind being hurt."
"Does it happen all at once, like being wound up," he asked, "or bit by bit?"
"It doesn't happen all at once," said the Skin Horse. "You become. It takes a long time. That's why it doesn't often happen to people who break easily, or have sharp edges, or who have to be carefully kept. Generally, by the time you are Real, most of your hair has been loved off, and your eyes drop out, and you get loose in the joints and very shabby. But these things don't matter at all, because once you are Real, you can't be ugly, except to people who don't understand”
