Technology can be a wonderful thing or a big pain in the #*!@. Two weeks ago Brian’s hard drive on the NEW communication device died. We sent it back to the manufacturer to be fixed and waited impatiently for its return. It is difficult to express the frustration, stress, anxiety, and sadness our family went through. Brian has lost the ability to talk. We use an eye gaze chart and try to read his lips. After experiencing the benefit of the device it was devastating to go back. Lots of tears, a decline in Brian’s mental health, and friends finding it hard to come over. In a word AWFUL. When the UPS man came to the door with the repaired device I thought I would kiss him. He was embarrassed and rather cute about the whole thing. Again, we worked our way through the set up and found out we could not make the device scan. Once again our hero Tandy came to the rescue and fixed the problem. Brian has spent the entire day playing with the device, loving every minute and smiling for the first time in days. It is nice to have Brian back!!
Last weekend our friend Brian Connolly took us to the Portland Historic Races. We spent the better part of a day driving Brian’s wheelchair around the paddock, looking at cars, people and watching warm-up laps. We had a great day! You have to love the smell of gasoline, the thump, thump, thump of an engine and the sweltering heat that radiates off the asphalt. Brian was all smiles. Thank you, Brian C.
Hospice has been a nice addition to our family. We are thoroughly enjoying the Chaplain. She is bringing books, articles, and PODCASTS for Brian to read and listen to. She is calm, well read and challenges Brian in his thinking. Our nurse is wonderful. She comes once a week, to check in, help me problem solve, and remind me we are doing a good job. I wasn’t sure about hospice, but I am relieved and happy we have it.
We continue to take drives; last week we explored the Keizer area near Salem. Beautiful countryside. My driving can be called hazardous. I drive with my right hand on Brian’s neck brace to help support his head, one hand on the wheel and usually one eye on Brian and one on the road. We have learned I need to pull over whenever he talks because I am going to cause an accident.
Brian’s health is gradually getting worse. He is on his vent most of the day; we have increased the pressure support to help give him more air. He has used his nighttime mask during the day. His back muscles are gone. He tires easily and takes several naps during the day. He was sleeping in his bed the last two weeks but has started sleeping in his wheelchair. I am not sure if the wheelchair is to help the pain or me. His hoyer transfers have become a two-person transfer but we are making due with just me for now. I think Brian is concerned and is trying to make things easier for me. He still laughs at the girls and I, makes funny comments on his device and looks at us with wonderful green eyes that say, “I love you”.
Diane is here visiting for the week. It is wonderful to have her. She is cooking, doing laundry, helping with Brian, enjoying her nieces and giving me support and friendship I need because I question my ability all the time.
Thank you Teri for all your help!
My last thoughts for this entry: Remember, this life is not a dress rehearsal. Live each day to the fullest.
A solemn thought: this is no way to live or to die.
