May 20, 2013
Yesterday we received a box with sound canceling headsets and a white noise machine for Emma to cope with loud and unpleasant sounds. [update note: she said the white noise machine is too loud. It is loud in a room. It may be better put to use in a therapist’s waiting in order to block session sounds out rather than in a closed living space.] She goes around with my dark sunglasses that are a bit too big for her head, and today she actually looks a bit better – more “with” us than she had been last week.
The key word in that last sentence is “bit”. She doesn’t have that frightened look and has not said that she can’t survive at all except for once last night at dinner. However, she has gotten very forgetful – it is difficult for her to remember the positive affirmation of “I am working on getting better” if she hasn’t said it in a few hours, though when she does say it, it is louder and clearer than before.
Thinking back to when she first came home to us in January (it has now been 4 months since she has been home), she was a functioning adult. A slightly paranoid functioning adult who was very much focused on what would happen to her if she committed suicide – the after life, the payback, etc. But still, she would go out with her friends, have lunch or coffee with them, laugh, cook dinner, run errands, and every day would ask what we will be having for lunch or dinner. Each time if we chose to go out or make a take out order, she would come with us or pick up the food for us.
Today, she is a very anxiety ridden person whose apprehension and intensity of hearing and seeing has increased to the point of a very dangerous disorder. She is not functioning as a young adult because of her fear and her sense that she isn’t able to cope. She doesn’t want to be left home alone. She doesn’t drive, she doesn’t go out for walks, she is so focused on things not being or sounding normal. For the last 10 days, she walks if she is not sitting or lying down. Her leg is always in motion and her hands shake.
Sometimes she is like a statue standing with one leg slightly bent and her hands in a prayer like position in front of her. She justs stares off, and I am not sure what she is looking at.
When she talks to me, she stares at me, unblinking, no emotion. She used to always think that people were staring at her, and maybe they were because she was very attractive and would also wear revealing or very tight clothing at times. Since she hardly goes out now, the staring issue is not a problem with her.
It isn’t like she is deteriorating and only getting worse. Somedays, sometimes, she seems almost normal in some things. Other days, other times, she is a zombie, or paranoid with a look of terror on her face. Some days she says she has a headache, other days, no complaint.
When I compare what she was 4 months ago, to what she is today though, it is frightening. Why has she gotten worse? More anxiety, less ability to function? Her hopeless feeling was there before – but now it is ever pervading.
She must be suffering, and we do not know what we can do to help. So many times I have felt that Emma was born into the wrong family. This family is one that is great for independent people who can fly out of the nest on their own. Emma needs to have support and kind love 24/7, and I do not have that in me.
Poor Emma, poor Emma. I do not know what to do.
questions to ask – what are the effects of the anti psychotics on people that do not have schizophrenia, bipolar disorder but are OCD, HPPD, ….