Rob says he is clueless

The title of this blog is what Rob said would be a good title for the posting this week. I think being “clueless” is what happens after 23 weeks in a medical environment, but overall he is doing great, so no worries. As you can see, Rob is doing really well being home again.

We have a nice rhythm together at home, and Rob gets the stress free rest he needs to deal with the coming week of rehab. We are also having a blast just being together! We are sometimes staying up a bit too late, but we have some really nice slow and lazy mornings, and I think it makes up for it.

We watched our first movies together this weekend. Up until now, Rob has not been able to relax and watch a movie or listen to a lot of music because it was too distracting. That is now changing, and we are both having a nice time just chilling out and doing a lot of nothing, but something. Our first movie was the “The Velveteen Rabbit” (thanks Rob V.). I wanted to watch something low stress to start with, but what I realised is that it was more about “me” not handling stress than Rob (yes, I even cry at sappy commercials these days!).

On Rob’s request, we then watched “Rainbow Bridge”, a Jimi Hendrix film, and Rob was in his element and loving it. On Saturday night I asked Rob what film he really wanted to see, and I was a bit surprised that he said “The Day After Tomorrow”. I would have never thought that would be his first choice for a film, and it’s interesting to see what he finds interesting after all of this. Again, I had a harder time handling the stress than Rob did – please, no more walls of water devastating people and freezing them in their tracks!

We are also trying to make his weekends good for his therapy. Rob did about 10 transfers (2 way) on Saturday. You can’t imagine how much work that is for him, but he keeps at it and is a real trooper. Needless to say, we are both getting more fit with this situation, but somehow you only see it in Rob, regardless of the physical exercise for both of us. Probably all of that extra cream, butter, etc. I put in all our food burns off in him much quicker than me. Still, we both feel more fit than we have in years, both physically and emotionally. A situation like this is definitely a wake-up call on basic nutrition and health. I really see that Rob’s intestinal problems started quite some time ago, but luckily we have the chance to make things better now.

Going to the pub on Saturday afternoon has been nice for Rob, and also some quiet visits from friends. We really enjoyed listening to some nice mellow music, Arthur Ebeling a Dutch rhythm ‘n blues guitarist, that Rob received as a gift from our neighbour Joost (thanks). Slowly Rob is getting back in touch again socially, and although he needs to take it slow, he really likes to sit and chat with friends again. We think in the coming weeks he will be able to go out more and maybe even go listen to some live music soon.

On Sunday we had fun making chocolate chip cookies for the nurses at Heliomare. When he was in intensive care I made them for the nurses sometimes, but we have not had the chance to do it together. It’s nice to be able to thank the great nurses he has at Heliomare, and wonderful that Rob could do it himself. I feel that he is in safe hands with kind and intelligent care. Thanks also to the great care-package from Les with the cookie sheets that actually fit in the oven — awesome!

Rob goes back-and-forth to Heliomare with a volunteer taxi organisation that have been just wonderful to us. These kind hearted souls make sure he comes safely home on Thusday and then back again on Sunday evening (an hour plus journey each way). It helps when you can sit and have a coffee and chat with someone who does this because they have a good heart. They all have been fantastic, and I don’t know all their names, but here is a picture with Nico tonight. Thanks guys – you are all wonderful! It’s always hard on Sunday’s to say “goodbye”, and as you can see from Robert’s face, it is very hard for him to go back.

Rob has a really rough few weeks ahead of him. We are having a hard time understanding the bigger plan for his rehabilitation. We sometimes feel that they base their plan on a calendar, rather than Rob’s actual situation or the possibilities. They seem to base his rehab on the average, not also taking into consideration his other medical situations (3 surgeries) outside of the strokes. For example, I think Rob was in “stasis” for 2 plus months, when the normal flow of his body stopped, and therefore he has a wider window for recovery than they might think possible. Rob is becoming very de-motivated by some of the negativity of therapists, and I am shocked that he sometimes hears what is not possible for him, before they have even tried any therapy. We are both getting very tired of having to fight every step of the way. The “politics” of getting care are sometimes more stressful than the actual situation he is dealing with!

They also don’t give us the bigger plan – only weekly “roosters” of his therapy, which change a lot. We know they are trying their best, but we sometimes wish they would go “outside-of-the-box” more, look at the bigger picture, and try more before making decisions about what is possible or not. I think we will get there in getting him what he needs, but it seems to be a constant struggle…

I think Rob could really use any boost he can get these next couple of weeks. They are going to be putting his left leg in plaster “gips” to help straighten it out. As you can imagine, it will be *very* unpleasant for him. Please feel free to telephone him at Heliomare in the evenings on his mobile (after 5:00 p.m. Holland time): +31 (0)62 033 3064.

While writing this post I got a call from Rob after his return to Heliomare. I really think the stress is becoming to much, because he had a “black-out” in the taxi on his return. He is safely in his room now, but clearly we have to do something to help him. Rob’s sister and parents and I are working on a formal letter to try to get him the full care that he needs and for them to lower the negative stress that is clearly causing him great harm. We only hope it will help… If not, we will need to find better solutions that fit for Rob and his situation.

Please keep Rob in your thoughts, as I know it really helps. We are all doing the best we can, but every little bit extra helps.