Diary December 2005


Shower lady

A lady from home care is going to be helping me shower soon. She’s an energetic woman whom I would have liked if I didn’t have ALS, but in my current state I feel she’s a bit too eager. During our “getting-to-know-you” chat she immediately suggested she could take over the duty of getting me out of bed. Before that, let’s see how well you manage with Hein’s help.

She arrived at Tuesday morning at 7:45, talkative as ever. I couldn’t get a word in edgewise and she constantly interrupted me. I just let it happen. After all, being awkwardly seated in a shower isn’t the greatest place to voice complaints. What I hadn’t been expecting was the flirting. “You’re so good at that, you should become a nurse too,” the shower lady chirped. “Why don’t you come work with us?” It didn’t help that Hein was clad in just his best swimming trunks. I was glad it was over. I just stuck my head in the sand.

But of course, it would be the first time of many. I have to say, she is very good at efficiently and properly washing me. After all, she studied for this. What does rub me the wrong way is her patronising tone. It’s obvious that she uses simpler language when she’s talking to me, as opposed to the tone she uses for Hein. Moreover, she mostly talks to Hein, although she does chat with him about me. I decided to make a stand. Hein diligently translated: “I’m not deaf, nor am I stupid and I hate it when other people talk about me while I’m in the same room.” She immediately recognised that her loud, simple tone was a remnant of her work with the elderly. Thirty years of caring for elderly people leaves its mark.

Way back when, I imagined that, if Hein was to relegate his shower duty, the new person would pamper me with skin creams or blow-drying my hair, things Hein didn’t have time for. Not so. This lady does everything at lightning speed and often has me tagging along with zero input. I’ve completely lost control. None of my other carers make me feel like that, I like to be in control as much as possible and they acknowledge that. I’ve decided to see her as Hein’s carer, not mine. After all, she mainly makes conversation with Hein while she’s bathing me (to the point where I have to ask them to leave when I have to pee). One downside is that I tend to act fairly childishly whenever I’m not in full control of the situation.

But I can’t just relinquish that control. If I did, you might as well put me in a box already. So, the time after that, I asked them to talk less. Hein solved it by keeping his distance. So, there I was, being bathed by someone who couldn’t understand what I was saying and feeling. She was relentless, despite my complaining. We made an extra appointment so she could get used to using a patient lift, the biggest obstacle for most of my carers and myself because it’s when I’m at my most vulnerable. We tried once and it didn’t go well. After that, she had to leave.

The next time she came by, we used the lift again, only because Hein was present. It was a catastrophe. She failed to remember that the lift is only used to get me from one seat to another and not as a vehicle. Besides that, she didn’t guide my body so by the time I was seated on the shower seat, I was already slumped. Hein helped straighten me out. Finally, she understands that this thing will take time and practise.

Is she a bad person? Not at all, but she is the kind of person who puts their experience before my personal boundaries. Maybe she doesn’t know any better. After all, I have no way of communicating with her and my whining doesn’t help.

I’m only writing this because I feel like we’re not building a personal bond. I took initiative and asked for her email address. Her reaction was very positive. The next time she was around, she even blow-dried my hair. I think we’re finally getting to know one another and for the first time, I’m optimistic.


I think the reason for my longevity is the fact that I’ve been able to keep some control in my life. I think I’d die if I were put in a nursing home. Of course, all of this wouldn’t have been possible without Hein and the kids.


Maybe it’s my naturopath, Piet Westein. I read an article by Adrie van der Wekken who has been visiting the very same neuropath for the eighteen years she’s had ALS (she put me on to him). I read an interview with him once and he explained his process, prefacing it with the warning that none of it had been scientifically proven. And don’t tell me we have a slow-acting form of ALS, because we deteriorated as quickly as anybody else when we were first diagnosed.

Don’t think about it

A last reason might be the fact that I just don’t think about my illness. Whenever someone asks how it feels to hear people talk about their normal ALS-free lives, I’ll often just say “nothing”.

Care packages
With some help, I put six Christmas care packages together, one for each of my carers. I bought everyone some candles and a candle holder. Getting something that fit everyone’s personal taste was an arduous task. I’m used to going to the grocery store with Netty, but I’d never been with Marjolein. She did wonderfully, even if it was a lot of effort for her. Most shops we visited were wheelchair obstacle courses. Besides that, I got a Katie Melua CD this Sinterklaas, which I copied lots of times and gave out as presents. My website’s visitors are are in the Christmas spirit too. The most searched for term on my website is still “Amyotrophic Lateral Sclerosis”, but this month second and third place went to “Christmas letter” and “Cranberry sauce”. Is there anything more Christmassy than that?


Whenever I burn CDs, download albums (like Eminem and Jamie Cullum) and films, I feel so with the times, telling the kids “you have such a modern mother.” Well, people have to get their confidence from somewhere.


Just when 2005 was about to end, my mother was admitted to a hospital for bruised ribs. She has an autoimmune disease and has been on prednisone for so long that her bones have become very porous. One unfortunate twist or turn in bed and she’ll bruise something. She can’t really live at home anymore. I can’t do much to help. I let my brother and her sister handle it.

Ward en Floor

I wish every one of you a happy and love-filled 2006!