New Direction

Sometimes when things aren't working we need to have the flexibility to change course. The thing is that Alma has been crying for almost two weeks now. She has breaks and moments of laughter (and dancing-so much fun), but for the most part she is a very sad person. And can you really blame her? It must be horrible waking up in the morning not fully understanding what's going on. There are some days when she sits in her room until I come in because she hears voices in the hall and thinks the house is full of strange people (to be fair, we are kind of loud and even though there are only three of us, we can sound like 20 at times, I'm sure). Then there are the times when she is quite lucid and reality hits her in the face like a ton of bricks as she tries to get dressed and realizes that she has no idea what she's supposed to be doing. On top of that, we never really fully understand where she's at intellectually and sometimes my "caretaking" ends up making her feel like a "big baby". It is so hard to figure out exactly how to help someone maintain some level of autonomy and dignity while making sure that all of their physical needs are met. In toher words, no wonder she's so upset.

This morning, while driving kids all the places they need to be driven on a day off from school, Alma started crying. We had a moment alone and she had a moment of clarity which she shared with me. She said, "I wish I could go somewhere that no one knows me. I wish I could be with other people like me." She went on to explain that she has become more aware of her condition through living with us. She is "embarrassed" that we are all seeing her slowly losing her ability to function like a "normal" person."Of course", I responded to her and then began thinking about the fact that I never considered what a blow to one's ego to have all of these people trying to micro manage. What a bigger blow when she has the clarity to understand that this will never get better. She doesn't want us to see her like this.

I'm not sure what this new direction will look like but I am accutely aware that something has to change here. This change will have to begin with a shift in our thinking about the way we interact with her. My hope is to find the balance needed to sustain her in our home as long as we can.