Diary

Hein and Floor’s skiing trip

It was my birthday present to Hein and, when it was still far away, it seemed like a good idea, but as the date drew nearer, I started to get worried. They were supposed to leave on Thursday afternoon for a long weekend of skiing in La Plagne, to return on Monday morning. I was dreading having to defecate on the commode, bathing and having to sleep in my chair downstairs for four nights. Lieke would fill in for Hein, alternating with my other carers. Once they were actually gone, my worries were gone. Especially when, on Friday, my carer Roeline offered to shower me with Lieke’s help. When she, in the nick of time (the chemist’s closes at six) offered to go get me a laxative, the weekend was looking brighter than ever. Not being worried about my bowel habits in particular really relieved some tension. It’ll make Hein’s free weekends in the future a lot easier. I’m sorry about talking about bowel movements this much, but I’m just glad I managed for a weekend without Hein. Continue reading “Diary March 2006”

I haven’t kept my diary this month, I couldn’t muster up the energy. Everything I’ve written here, I wrote at the end of the month.

Goodbye

I parted ways with my carer Carlien, who cooked us an Indonesian dish called Soto as a parting gift. She had been with me for a year and eight months, two days a week at first, later reduced to once a week. She knew everything there was to know about movies, watched the same shows I did, taught me how to download things and helped me read. She is a physical therapist who specialises in breathing and relaxation techniques, a field in which she’d found a job. Saying goodbye to an old carer also means we have to train a new one, which is always a challenge. The new carer started on Monday, May 1st. She was home alone with me. I’d hoped Ward would be home, but he was gone for the day. Thus, we had to manage together, I was nervous and she was unsure. When we gave her instructions we had focused on helping me use the bathroom and omitted the communication part, which proved to be a bottleneck. I was getting more and more frustrated until she decided to call Hein. That was probably the moment she decided to quit. She left that very same day at 12 o’clock. Continue reading “Diary April 2006”

Schiphol

Floor got back from her holiday to Crete on June 11th. Hein was on holiday as well that weekend, so we couldn’t pick Floor up from the airport. I’ve never gone anywhere in our van without Hein, because getting me into the thing requires a lot of muscle. When Roel proposed we go pick her up together, I didn’t hesitate, because Roel is a strong guy. Thus, I had my first van ride without Hein in six years, a milestone. Waiting for people at Schiphol Airport isn’t as fun as it used to be, by the way. No more glances at each other through the windows until the person being picked up collected their luggage. All there’s left now is an anonymous exit and texting back and forth to find each other. We came home to the smell of pie and the anticipation of the first match of the World Cup.

Oh, and Floor? She had a good time. She barely went anywhere on the island and the only differences between the pictures of her on Crete and her in Zeeland were the views. Continue reading “Diary June 2006”

Margriet de Boer passed away

Margriet and I started corresponding two and a half years ago, when her illness was still in its infancy. I had a lot of fun emailing with her, even during rough patches. I feel like a coward for not responding to her final email to me. It was about struggling through life and her doubtful future. I didn’t know what to write. I didn’t want to think about those things. Two years ago, she took a train all the way over here. I thought she was so brave for doing that. To my surprise, her funeral notice included the very same Steve Shackel quote as the one on my website. Apparently, a lot of people who google Shackel get redirected to me. His name had twelve hits this month. I have a lot of fond memories of Margriet. Continue reading “Diary July/August 2006”

Second shower lady

Because I shower more than I used to, we decided to hire a second shower lady. The showering itself is going well, but again, her patronising annoys me. Loud and simple sentences, using words like ‘sweetheart’ and ‘missy’. I despise it. I’m about her age, I just happen to be paralysed. Apparently it’s hard not to adopt that tone when you work with the elderly. Should it be, though? Would I warm up to the idea of being called ‘sweetheart’ in my 80s? Continue reading “Diary September 2006”

It’s already November and I haven’t even written anything for October. Whenever I see the analytics of my website I feel guilty. About a hundred people a day try to access my nonexistent October entry.

October went by uneventfully. I can’t use my PC properly anymore. I can’t play more than one game of FreeCell, check my email or watch a TV series. I answer my emails with a carer’s assistance. I’m having trouble writing my diary. I can’t keep up with it anymore. I’ve downgraded to an older PC so I can use my old word prediction program, which I hope will allow me to type more autonomously again. Especially with Sinterklaas around the corner, I think a bit of autonomy would go a long way. I wouldn’t like to dictate entire Sinterklaas poems to someone.
I sometimes spend whole days doing nothing. I’ll have a morning nap, wake up just in time for my afternoon nap and fall asleep in the evening while I’m watching TV. Thrilling. Even though they’re called ‘power naps’ now, I still feel groggy whenever I have one. Continue reading “Diary October 2006”

Dreaming

One would think that my dreams would have caught on to the fact that I have ALS. The truth is the complete opposite. In my dreams, I ski, hike up and down mountains, go to work (knowing I’m ill, but apparently I’ve recovered in those dreams) and generally act like a normal person. In some dreams I’m unable to talk, although eating is never a problem. Dream-me likes thick chips with mayonnaise. People are strange like that. I often have lucid dreams, where I know I’m dreaming but I don’t wake up. Sometimes, when I’m sleeping in my chair downstairs, I dream of standing on the edge of a ravine. After that, I’ll jolt awake and feverishly check my surroundings to confirm that I’m, indeed, just in a chair in my living room. I’ve heard so many other people with ALS talk about how their dreams adjusted to their condition. I guess I just haven’t caught up yet. Continue reading “Diary December 2006”

Meet and greet

We (my help Marjanne and I) had just paid for our groceries when a strange woman came up to us. It turned out that she reads my diary and caught me on one of my sweets shopping sprees. I was taken aback and asked her if we’d ever met before. We hadn’t. She introduced herself and told me she’d been an avid reader of my website for a long time. By now, I’ve forgotten what her name was, but I’d know her face anywhere. She told me she’d say hi the next time she saw me. This chance encounter made me feel so special. If, at any point, you see me in a supermarket, don’t hesitate to say hi! Continue reading “Diary January 2007”

Summer holiday

It’s finally booked! Destination: Germany, more accurately the lakes region north of Berlin. We have a traveller’s guide to Germany with more than 200 pages of wheelchair-accessible holiday destinations. Kudos to the Germans for being so forward-thinking. Sadly, a large number of the suitable destinations were tiny holiday homes or cramped hotel suites. Eventually, we found two suitable bungalow parks. As always, the kids are coming with us. The brochure advertised a lot of water (meaning a lot of mosquitos). We’re hoping that the surrounding villages will be interesting and cultural. Berlin is closeby, too. Continue reading “Diary February 2007”

81

On Saturday, March 3rd, my mother turned 81. Last year the was in a much worse place because she couldn’t get used to living in a retirement home. By now, she’s had home care for 6 months. So far she’s found a balance, though it’s still a bit shaky. Indoors, she uses a walker, which she often forgets when she needs to get somewhere in a hurry, like opening the door. She’s pessimistic about her situation, but she’s doing a lot better than she was last year. She’s talking again and got some of her pep back. She has become very hard of hearing, which is alienating in its own right, so she feels a bit isolated. Everytime one of us calls her, the rest of the room can follow the entire conversation too. “This is Hein speaking.” “Who?” “Hein. HEIN.” Every now and then, she makes us laugh when she says something archaic. Today, after we rang her doorbell, she greeted us with a: “Come in, and leave your hats at the door.” Continue reading “Diary March 2007”

Easter without the kids

There are some people who would enjoy a “long weekend without the kids”. Those people are not us. While they probably envision a fun weekend of hiking, cycling, going to see a movie, going out for dinner and generally having a great time, all we have to look forward to is a weekend of hard work. I have to eat, drink, use the bathroom and get put in/taken out of bed. Usually, the kids help to lighten Hein’s workload, but this Easter it was all on Hein. Luckily, Marjanne was there to help us with dinner. I don’t want it to sound like we didn’t do anything, we played bridge, celebrated easter with company and even went to the Garden of Europe on Easter Monday. And, of course, we went to collect Ward from the airport. Continue reading “Diary April 2007”

I didn’t write anything this month. Sometimes, I just can’t get myself to put anything on paper, usually because not enough happened. I spend most of my days lazing around, something I’ve gotten a lot better at over the years. I don’t read much, either. I don’t look forward to holidays and days off, but they usually turn out alright in the end. It’s been nine years since I was diagnosed with and ten years since I got ALS. Sometimes, I think to myself “that’s probably enough”, though I know I’m not supposed to. All it takes is one good idea, like Monieke’s fundraiser, and the thought is banished from my mind again. Planning is my favourite pastime. I have to be careful not to be too controlling. Sadly, Monieke is taking some time off right now, so the project is on a hiatus for now. Continue reading “Diary May 2007”