I had a great email from Jane at work today. Actually it was a copy of an email she sent to Fiona's treatment team detailing Saturday's visit. It was great to sort of see the visit through her eyes and there was such happiness in what she wrote, and such kindness in her words about us that I glowed all day.
My mom I think, doesn't get any of this. I know she cares about Fiona in a sort of detached way. But she thinks I "think about her too much." And she told me that she was glad the visit had gone well and was over, because it must have been an ordeal. I know she meant that in a nice way. But ordeal? That is not exactly the word that sprang to my mind, or that I thought my details would convey. OK I let that one slide.
Then today when I told her about Jane's comments, and that we would plan another visit, she said that Fiona should "earn" them. Sigh. There was my mom, in the same rut that so many clinicians had been in during the years I have been part of Fi's life. And it. does. not. work.
See in order for that type of thinking to work, there are several big things that have to exist.
1. The person has to believe that they are worthy of the reward. Not only does Fiona not believe that, I don't think being with family should be a reward.
2. The person has to have some level of time sense and an ability to wait for things. Fiona due to cognitive delays and mental health issues does not. She doesn't know the days of the week. She can say them, but they don't have a time relevance for her and she doesn't notice their passing. She can not comprehend a calendar. A reward program for Fiona has to have virtually immediate gratification. i.e. no outbursts= a reward that day. This type of situation doesn't lend itself to family visits which can not be with that level of frequency and that spontaneous given the distance involved.
I don't mind that my mom doesn't know that. I do mind that I don't think she wants to learn.