Diary November 2001

Too much

Sometimes, enough is enough. Even on his days off or after his bicycle trips, Hein comes home to a household in need. And it will always be that way. However hard I try to amuse myself. The social workers’ schedule is based around his work hours and whenever friend take care of me, it’s Hein is working too. It doesn’t exactly ease the burden on Hein. In fact, sometimes someone else should be taking care of me when Hein is home, like my mother does. Then again, it’s weird to be at home with a stranger around. And our kids are young and thus not always deployable. Hein does have the option to go out. I can stay home alone for up to two hours, a timeframe dictated by my bathroom use. But I think that “having had enough” is recognisable for many spouses of ALS patients. Very understandable. Like that, we carry on. Continue reading “Diary November 2001”

Diary July 2002

Wheelchair conversation

Talking to people while I’m sitting in a wheelchair is a delicate procedure. When it’s just me and my accompanist, I prefer my conversation partner in front of me. When we run into someone on the street, my back is usually to the person striking up conversation. When that happens, I always screech “turn!” so I can at least look at who’s talking. That doesn’t mean I’ll feel involved; I’m way lower than anyone else, after all. But like that, I can at least ask questions, through Hein. The worst thing is being in between two people having a conversation. Hein, unreachable behind me, the person he’s speaking to in front of me. It makes me feel superfluous, and I lose interest. Continue reading “Diary July 2002”

Diary November 2002

Hein 50

Well, it’s done. Everyone contributed to the newspaper. It turned out lovely and pretty. Apart from that we made a song and had a quiz before we gave him his present. This weekend, Hein will go to Berlin with a friend. The birthday party was a huge success. We’ll be looking back on this one for a long time.

I find evenings like this one difficult. I can’t talk, all I can do is nod and take everything in. It couldn’t be more different than how I felt during the planning stages. I was in my element. I felt relevant again, I was in control. It’s the feeling I used to have at work. Continue reading “Diary November 2002”