Diary August 2005



I’ve been busy looking for a new pair of shoes since last August; they have to be comfortable, but sturdy enough for me to be able to stand up in them. After one failed attempt, where we only consulted a cobbler, we decided to try again, that time under supervision of a rehabilitation doctor, but to no avail. The resulting shoes just made me twist my right ankle, meaning I couldn’t stand up in them. We’ve devised a way to combat that: an EVO (an orthotic that functions like a splint) that keeps me from spraining my ankle.

Like the adage goes: never throw out your old shoes before getting new ones. Literally, in my case. I can’t think of any reason why I should exchange my current comfortable footwear for new uncomfortable shoes that prevent me from standing up and require orthotics to work properly, making every bathroom visit, where I’m already required to use a patient lift, a mechanical nightmare.

Downloading movies

Carlien, one of my carers, gave me a DVD copy of Hotel Rwanda. At first, we couldn’t watch it because my new PC hadn’t arrived yet, then because our specialist couldn’t attach the PC to the TV and lastly, because we didn’t have the correct cables. Carlien’s boyfriend came to the rescue and, in doing so, showed us how to download movies. After three days of downloading, the first batch arrived. They don’t have subtitles, but I could do with some English practise. I could tell I was missing out on some of the finer details in the dialogue of the first movie. By now, we’ve made a list of movies to download.

How much help should we expect from the kids?

It started with just making me some tea, a fruit smoothie, but now it’s gotten to the point where we think Floor would be able to help me use the bathroom. Because of our decision to hire as few carers as we could while still maintaining a manageable schedule, the kids and Hein are usually the ones taking care of me in the evenings and during weekends. It wasn’t sustainable, so Marjan cooks for us and feeds me on Saturdays, Lieke cares for me for one weekend a month and the kids are becoming increasingly involved. From the start, Floor wanted to know how to operate the PEG and the big syringe and after a while, Ward’s curiosity got the better of him and he learned how to work it too. “Why did I ever want to learn this?” he’ll often say when he has to give me water for the umpteenth time. Only two things were off-limits for the kids: using the bathroom and bathing. By now though, Floor has already shown her aptitude using the patient lift. She had been anxious to try it for a while, because she knew as well as I did that she would be taking some weight off of Hein’s shoulders. She immediately nailed her first attempt, probably because she had seen it done so many times before. Despite our initial doubts, we’ll call on her for help if it’s needed. And as it happens, Hein has a knee infection this week, so while Hein is limping around the house and lying in bed, Floor, with Ward’s assistance, helped me out in the bathroom.


There hadn’t been too many developments on the carer front the past year. We even managed to construct a good schedule over the holidays. But by the time autumn came around, the golden age was over. Brenda is going on a journey to Australia and Canada for a year and Carlien finally found a job as a physical and respiratory therapist. I’m happy for them, but it’ll be a huge adjustment for me. We’ll have to find new carers in the coming four days.


August was quiet. My biggest victory this month was finishing two Harry Potter books. Floor was away on holiday for two weeks and wouldn’t be celebrating her birthday at home, had it not been for the fact that her tent got flooded in Zeeland, meaning she was home for her birthday (after hastily being evacuated by a friend’s parents). We hastily bought streamers, a birthday cake and presents. School started a week ago and the kids are still adjusting to having obligations again. Hein’s infection is getting better. While we managed just fine despite it, it did lay bare the fragility of our carer system.