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SO I have a meeting with a Private Care Company on Friday. I spoke to Tony about it and depending on the cost, whatever we can afford is better than nothing. IF they are willing to go into the hospital and do some ROM even just a couple of times a week it's better than what he has going on now. Which of course is nothing. I joked with Tony tonight that we really should have made better friends so we might have more volunteers to help and he laughed and laughed. I should have gone to church more often ... that sort of thing..... We laugh about the strangest things.

I have been examining the tax forms and have stumbled upon a 'attendant care Expense' info. Could I hire someone to assist in his day to day care? To bath him every day and give him more personal care and time? Someone that can give him ROM exercises every day?? or at least more than he's getting now?? Am I still trying to fix something that can't be fixed?? our health system doesn't support caring for a family member at home yet doesn't have enough staff to give Tony the attention that he needs because he is unable to move or talk..... I am going to do some research and find out...

She doesn't want to get anymore testing. The doctors at UCSF recommended her to go in for this week long test that would determine a diagnosis, as well as participate for a study to help new technology testing in the field. It was also supposed to run some genetic scans to determine if this strain of MND is genetic... so all in all it sounded like a pretty good deal. Especially because it was free of cost and they were even going to put her up. We were excited because getting a particular diagnosis will give her access to resources and also give her family a better idea of what to expect.

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.

I am taking things day by day. I have an unending to do list and very little time with 'help'. I finally got AFO'S after 2 months of trying. Now I've spent 2 days trying to find shoes for them to fit into. I just got my hospital bed and 4 inch foam it is the best thing ever. My PCA hasn't been paid in 6 weeks - something went wrong 6 hrs 3 people helping and they think it is fixed.:-x Today rested from shopping yesterday and played with baby.:razz: kris

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...

I don't know if i will keep this up or if blogging here will be the answer for me. But i find it important in the wake of all i have learned about this terrible disease to chronicle my feelings about it and document this journey in some way. Even if it's just to vent.

It is a very strange and difficult time in a family's life when a loved one is frail, helpless and inching their way towards the end. This is where my family and I are and it's especially bizarre because it's our strong protective father in this position. All my mom, my sister and I can do now is give him kisses, show him love, massage his sore hands, share happy memories with him and just be there by his side.

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.