A lady from home care is going to be helping me shower soon. She\u2019s an energetic woman whom I would have liked if I didn\u2019t have ALS, but in my current state I feel she\u2019s a bit too eager. During our \u201cgetting-to-know-you\u201d chat she immediately suggested she could take over the duty of getting me out of bed. Before that, let\u2019s see how well you manage with Hein\u2019s help. <\/p>\n
She arrived at Tuesday morning at 7:45, talkative as ever. I couldn\u2019t get a word in edgewise and she constantly interrupted me. I just let it happen. After all, being awkwardly seated in a shower isn\u2019t the greatest place to voice complaints. What I hadn\u2019t been expecting was the flirting. \u201cYou\u2019re so good at that, you should become a nurse too,\u201d the shower lady chirped. \u201cWhy don\u2019t you come work with us?\u201d It didn\u2019t 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. <\/p>\n
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\u2019s obvious that she uses simpler language when she\u2019s 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: \u201cI\u2019m not deaf, nor am I stupid and I hate it when other people talk about me while I\u2019m in the same room.\u201d 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. <\/p>\n
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\u2019t have time for. Not so. This lady does everything at lightning speed and often has me tagging along with zero input. I\u2019ve 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\u2019ve decided to see her as Hein\u2019s carer, not mine. After all, she mainly makes conversation with Hein while she\u2019s 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\u2019m not in full control of the situation. <\/p>\n
But I can\u2019t 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\u2019t 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\u2019s when I\u2019m at my most vulnerable. We tried once and it didn\u2019t go well. After that, she had to leave. <\/p>\n
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\u2019t 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. <\/p>\n
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\u2019t know any better. After all, I have no way of communicating with her and my whining doesn\u2019t help. <\/p>\n
I\u2019m only writing this because I feel like we\u2019re 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\u2019re finally getting to know one another and for the first time, I\u2019m optimistic. <\/p>\n
I think the reason for my longevity is the fact that I\u2019ve been able to keep some control in my life. I think I\u2019d die if I were put in a nursing home. Of course, all of this wouldn\u2019t have been possible without Hein and the kids. <\/p>\n
Maybe it\u2019s 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\u2019s 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\u2019t tell me we have a slow-acting form of ALS, because we deteriorated as quickly as anybody else when we were first diagnosed. <\/p>\n
A last reason might be the fact that I just don\u2019t think about my illness. Whenever someone asks how it feels to hear people talk about their normal ALS-free lives, I\u2019ll often just say \u201cnothing\u201d. <\/p>\n
Whenever I burn CDs, download albums (like Eminem and Jamie Cullum) and films, I feel so with the times, telling the kids \u201cyou have such a modern mother.\u201d Well, people have to get their confidence from somewhere.<\/p>\n
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