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My gag reflex has gone into overdrive. I have choked on 3 of the last 4 meals, always with a mouth full of food that was being chewed. Analyzing those meals , if I dont have to chew it , I am ok. I was able to chug down the rest of my meal after it had been Vita-mixed. It was very thick. More experimentation is needed. updated Feb 20 had a muffin drowned in melted butter for breakfast. toast and marmalade too - little bites worked had a fruit cup and a resource 2.0 for lunch. had minute rice with hamburger with soup sfirred in, added chili sauce and some soya sauce for supper.

The storm has blown over..... Tony is calm and collected. The welts or sores on his arms are on his chest too. He refused to allow the dr to treat it at first but the nurses tell me that he has agreed to allow them to put cream on one arm to see if it will work ... He was REALLY tired and drifted off to sleep while we were watching Heroes.... thats a first. His breathing was a little raspy too .. and that's new.. maybe I am just noticing it... The nurses confirmed that he is more tired than before..... All in all a relaxing and calm visit. .. :)

So went into the hospital ... and Tony was so agitated and upset. The ' chair' was gone and he was going on and on about his meds. I have seen this behavior before and it's quite distressing. I know that if I get his attention and am very firm I can most times stop the loop that he is stuck in. A very long story short....... Tony has refused the chair despite everyone saying that it is beneficial for his body...... He is freaking about his meds again.. I bet he suspects that they are giving him more bowel care meds.. which they are... :)

I looked in the mirror today and my goodness I have been crying for days now and it shows in great big bags under my eyes... I don't think I have any cucumber in the house... lol! and i have no idea what works for bags. Red eye I can fix but not this... I might have to post this dilemma on the boards and see what Zaphoon has up his sleeve for this.. :) CRYING Bags under the Eyes....

So turned out my mom was here for just me ... we talked all afternoon... hugged and cried. It was good to be with her... Mom's are awesome! So after a great afternoon I had to go in to visit Tony as I said I would see him Monday. A few things had changed... the 'new' chair was off to the side , and the old easy boy was back in postion., He has sores all over his arms, haven't seen those for a long time. He said he had a bad day Sat ... no BM for 7 days.. Funny my dad didn't mention it..

Does any one have any info on this Gene ??

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 in his back yard building something... or at least directing us to do it.. lol!

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 I see how much he has lost and that there isn't much left to lose....

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.