Ellamay's blog

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 it was right or not..

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 support from the States. Found a Speech therapist in SanFransicso to help Tony.

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...

Well.... it was good and it was bad. The good part that we had an apportunity to engage with Physio and Managers. The bad part is that they did not give Tony what he wanted which was structured physio exercises. He kept writing out on his word board. ' so no ROM?' over and over.

So .. this is where it stands today with Tony's quest for ROM and stretching therapies. The rehab

Ok not one word from the Palliative Manager today. Can that be bad news??? i don't know ... Tony and I had our regular Wednesday after work date... watching Season 3 of Hero's. We started watching this when he first got sick ... from the video store... we've been hooked ever since. :) We are one season behind but it works for us. Tony's hospice worker is back from vacation and I am very glad of that.. she is good for him and I think he's been missing her.

Many things have happened in the last few months that have been frustrating. The Palliative Care staff said that they didn't have time to do ROM exercises for Tony. I had no where to turn I know that it takes a long time to do personal care etc. but he is still in pain and he understands the importance of these exercises. I sent a letter to VIHA patient quailty care dept. stating that in their own mandate (which I found online) for Palliative ALS patients that exercise is important. I got a call within two days of sending the email.

My heart breaks every time I see Tony ... it was a few short months ago that he could sit up and move his body. Now he is totally bed bound... well they do still put him in his easy boy chair but he cannot move on his own.