Ellamay's blog

How to go on ... I get asked everyday ..... ' how do you do it?' ... I marvel at that question because what I do is not a choice. It's the committment that I made years ago. In the beginning of this ALS journey with Tony I sat down with him and said ... ' I don't think I can do this'. I have been frank with Tony from day one..... This disease does not allow you to mince words or pretend. I had to face everything head on... reality sucks big time.....

How a few short months and so many things change. Tony can no longer use his laser at all and has taken a turn for the worse. We ended up in emergency a couple of days ago as a result of Lockjam ... and he had serverly bit his lip. He has hallucinating badly and communication was difficult as a result. They gave him some medication and his jaw relaxed and off we went back to the Care home... Ride NUmber 2 in the ambulance in one day. the next day he was so agitated that he was given morphine and he finally slept...

I decided to get a tattoo as a tribute to Tony and the struggles that he has had. I picked a swallow to symbolize his inability to swallow...... It is so difficult now... Tony is such a fighter.... he can barely move his neck now and even spelling out one word with his laser pointer is nearly impossible. Lots of frustration for everyone....... But our main concern now is just keeping him comfortable and as peaceful as possible.......

It has been a difficult time for Tony to adapt to a new environment. But time heals so many things and he has finally started to settle in. Tony's new Dr is fantastic and we had a care meeting that went very well. Tony has even been more agreeable since that meeting. I am told that he continues to progress his OT tells me that his right side is really being affected right now and I can see it.. He is tired all the time and struggles to stay awake when I am there and often when I arrive he is sleeping in his chair.

I think that Tony has finally come face to face with the fact that he has ALS. He cries every day and complains constantly about his lack of care and that no one listens to him. I have spoke to all the caregivers and they are trying so very hard but he has gotten extremely difficult. He suffers they think from some sort of complusive disorder and that makes it harder. Combine that with the inability to talk and it is a recipe for mass confusion and frustration.

Things have taken quite a turn...... Tony was virtually kicked out of the Palliative Care Unit to a facility that does not have the staff to care for him. He is failing and fast....... He is unhappy and scared as the turnover of staff don't know how to take care of him. Some are even afraid of communicating with him ... it is heart breaking. The PCU staff have been coming in to visit Tony but that is not enough. I took almost the remainder of my vacation to try to assist and be Tony's voice. To try to help train these staff members on what to do with Tony.

Great news... Our first volunteer is starting on Wednesday. She is a retired physio therapist! She met Tony last week and couldn't wait to start working on him and seeing how is body is. We are working with the hospital's Physio dept to ensure we are giving Tony the correct exercises and stretches. She will work 3 days a week with Tony ( to start) and then see how things go from there... I have 3 other volunteers who will come in the evening and afternoons to give him ROM in his easy boy and massages. I am overwhelmed by the support Tony is getting.

A funny thing .... I didn't check my phone messages when I got home from the hospital right away. There are volunteers phoning me!!!!!!!!! I guess the volunteer society put my ad in the paper and I have people calling willing to help! I can't believe it! I have been disappointed so many times with people not helping us that I am in shock that strangers would assist us. One lady is already working with an ALS patient so is experienced. Who would have thought.

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...