How do you stop crying? This journey has been over a year and I just can't stop the tears. With Tony it has been swift and unrelenting. With only 5 months between peg tube placement and moving to Paliative Care. It's been 7 months at the Paliative Care unit... unheard of I think. It's not that the progression slowed but because there is round the clock care he is doing less ... and conserving his strength. Not on purpose of course but as a result of where he lives... He would rather be...

I called Hospice to get an appointment with my counsellor. I was crying so bad on Friday I couldn't stop and I still had to go to work..... I think that sometimes I think that he is not progressing and that he might get better. Sounds crazy I know... but when he has to accept that his condition has worsened and new equipment is needed. It is so hard to be at his side when his grief overwhelms him. I take it on as mine I think.... I think that the "rose colored glasses" slip off and...

OK .. so the communication sucked .. now the fitting of the chair. Took 3 staff members just to get him into the chair from the lift. The decision was made that they needed the overhead lift from bed next time. Now the ever shifting and discussion with Tony about how every little movement and adjustment worked or didn't work for him. He kept looking at me pleading for me to respond and when I did.. the frikcin PT wouldn't even look at me when I spoke for Tony. I knew immediately whether...

I hate the lack of communication that these professionals have. I have been Tony's voice for over a year and they won't even acknowledge when I talk for him. They won't even talk to me about the ALS loan cupboard and what is available to him for communication or comfort. They just say that we've tried everything that the hosptial has, if I had listened to what these professionals say Tony won't even be able to communicate as they weren't going to give him the laser board option. I had to get...

I went in early before work to put up some pictures and replace the blades in his electric shaver. I am glad I went in. He didn't remember that i told him that I would come in on Thursady morning before work.. I think I have to write on the board to remind him when I am coming in. Memory prompts...

He was not in a good way. A new nurse , again, and that gives him lots of distress and fear as they don't know what to do and when he panics his legs start jumping up and down....