Ellamay's blog

Today I went in to visit ... brought Tony some new crocs as his were too small with his swollen feet. They fit perfect... :) i knew the moment I came into the room that something was wrong. He had a bad nurse today and it threw him off .... i guess she got him up early at 10 am ... which is too early for Tony to start moving . He is VERY groggy in the morning as he stays up till 2am or so. Anyways it throws his whole routine off if it's changed and he becomes upset for the rest of the day. I am trying to be supportive yet not getting in between him and the nurses.

The family is all coming tomorrow to visit. I hope that it's not too overhelming for Tony. My parents are going to go up early and then come back to my place. Then Tony's parents are going to visit in the afternoon. It will be a big day for Tony. I have to go and warn the nurses today :). They are concerned that it might be too much for Tony to have so many people at one time. The Family from out of town ... is 5 people at one time I think it might be a little too many but I am not going to say anything... if it's a problem we'll let the nurses say something...

After work I went up to the hopsital. I joined Tony mid-stream of Olympic tv watching... He is riveted! I am so glad that he has a focus that is positive right now and not stressful. The mulitple sores on his arms are healing finally the common thought is that they are stress induced. I am not sure if it's that or as a result of not having a BM for over 6 days...

Somedays you can't look past what is right in front of you .... the here and now. And right now it's the Olympics... Tony a few months ago told me that he would die in February after the Olympics. For the last year he has set dates over and over as to when he would die. Sometimes he would read something about life expectancy of Bulbar Onset and that was it we would have a new date. I am happy to say that every date has been surpassed and he continues on.

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..

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....