My primary focus since our return from China has been to put in place a therapy program for Chris on top of the existing therapies he receives from the nursing home. The process has been very frustrating to say the least. As I pressed for very detailed information about Chris current SALT protocol, I have not received much response. I have a very strong suspicion that Chris has received almost nothing in terms of SALT from the Jacob, so this is the first thing that needs to get sorted out. I want the Jacob Centre to do their part first – and then I will add with the private therapy. I think one of the big problems for the last year is that the SALT in charge of Chris has been off sick more often than not. I am sympathetic to her health issues but this has been dragging on for so long (literally months) and it is negatively affecting Chris as obviously she is not doing her job.

On Saturday though Chris was assessed by the private SALT Trudi - I will likely be hiring her going forward. We had a very good chat and she felt Chris was so responsive to her, vocalizing a lot when she was talking to him. She feels there is so much to be done with Chris to improve his communication abilities, and loads of things that can be just passed on to the nursing staff as to encourage for example choice: ask Chris every morning which T-shirt he wants to wear. The staff would give him two choices and he would have to point with his eyes which one he wants to wear. This would also ensure Chris would have an impact on the environment, and give him choice, etc. This is likely to be a long process but with repetitive consistency in implementing this, Chris may benefit tremendously. So this is just a very simple example of what can be done for Chris.

On the PT front: Chris will have the private PT come for an assessment on the 12th of May. Currently Chris has 45 min PT everyday. I spoke with S. his therapist but she believes that there is nothing beyond what they already do that can be done to help Chris because he does not participate in therapy. She believes nothing I do for him will make any difference at all. Yes, she is a bit pessimist regarding Chris progress. But on top of having a bad attitude, I think she is negligent. She allowed Chris to seat on his new comfie chair for all these months when she believed that chair was compromising his posture. Why she let this go on for all this time is obviously very simple: she does not give a shit about what happens to Chris. I am not happy about having someone like her – who thinks Chris is a hopeless case – be his therapist. I am very frustrated and pissed off beyond many classes of yoga. Yoga normally helps me get past a lot of anger but I am still very angry about this situation.

I am going to look at alternatives. I may even look for another hospital. This week I am really tired of everything for some reason. I think it is the accumulation of the long trip, coming back to a new job position, dealing with all of Chris’ care issues... Chris is more than his care and therapy issues. He is my husband and he is entering his 4th year living completely disabled in a nursing home far away. Maybe I am tired and wiped out because for some reason I never cried as much as I did this week. I am not sure if I cry for my loss and my life as it is today, or for Chris and his loss and his life today… at the end, it was supposed to be our life together and I think I cry for our lives today which were supposed to be one happy life together and it turned out to be this nightmare.