My first journal entry
It seems odd to be writing in Brian’s journal. However, it is necessary for me to take over the task. Brian’s ability to communicate is gone. We have disconnected his cell phone, I answer all his emails with his ever-present gaze at what I am saying, and the girls and I are the only ones who can understand him when he speaks. This has caused much frustration and what we call communication break down. Amazingly, he has kept his spirits high, always has a smile, and has his wit about him.
On May 12th we went to our last ALS clinic. After much discussion and thought our Neurologist suggested and we agreed to only see her in the future. The disease has progressed past the point of seeing the physical therapist, occupational therapist, speech pathologist, nutritionist, respiratory therapist and social worker. We will see Dr. Goslin and handle any medical needs through her and her staff.
By the end of the week, we will be part of the Hospice program. In May Brian’s breathing had deteriorated to the point where they did not test him. The Pulmonologist thought it was some where between 10-15% of normal. Down from 24% in March. We have mixed emotions about this new stage in our lives. We are scared, sad, numb but also hopeful they will be able to help Brian be more comfortable. At the moment he has to sleep in his wheelchair because of severe back pain. The wheelchair has more adjustments than the hospital bed so we can make him changes to his position quicker and easier. He is on his ventilator about 22-23 hours a day. The vent-as we call it, it attached to the back of his chair to make moving around easier. Yesterday, his communication device arrived. We spent several hours today trying to make the device work. The easy step-by-step instructions and on-line help aids are frustrating. We both agree it would be easier if Brian did not have to rely on me to work it. I am not much for computers or figuring out new systems. The device will be attached to his chair so he will be able to use it all the time.
Over the last month, we had some wonderful visits from Brian’s sister, brother and mom. It was great to see them. We will treasure those visits always.
Recently a very dear friend was reminded by our situation that this life is the real thing. It is not a rehearsal. This is the most important lesson you can get from our journey.
