Abstract
Background
I, the 45-year-old scientist, the PhD, the sublime researcher, now subject to dementia? I felt confused, very ashamed and told no one, until they found out. I suffer from brain atrophy, associated with multiple sclerosis I am suffering from for years. My cognitive impairment is the result of my shrinking brain!
Objectives
With my personal view ‘Dementia Looming!’, I hope to contribute to and support healthcare professionals and scientists in understanding the meaning of dementia. Although not scientific, my paper gives a unique behind-the-scenes view into what it means to experience dementia symptoms.
This cannot be true! I, the 45-year-old scientist, now subject to dementia? Twelve years ago, I was diagnosed with multiple sclerosis. In the years that followed, I had many relapses, which in my body usually results in paralysis. These paralyses recovered time and again and in recent years, I have even had no significant relapses.
Last summer, however, I felt that something was very wrong. I had made coffee without putting water in the coffeemaker; I had cooked eggs without igniting the gas on the stove. The eggs were therefore still very raw, but despite realizing they were raw I did not manage to stop using them at that very moment. Instead, I peeled the raw eggs over the salad and inserted them as such: raw. A similar strange foolishness of mine made us miss our plane to Spain. Of course, I had taken care of the tickets and I knew exactly where and when we were leaving. I would have been upset if my husband would have even tried to check this with me. If only he had done so. Upon arrival at the airport, we saw our plane depart. In response, I panicked. I was overcome by the deep-rooted feeling that all was lost and I would never get well. Meanwhile, my husband was relaxed and booked new tickets for the next day. I was shocked more by my own unnerving reaction than by missing the flight itself. Normally, I would have never responded like that! A terrible feeling came over to me. I tried to push it away, to deny it, but it was real; I had begun to lose my mind.
I did not admit it at first, but the scientist in me won at last. I had to know, and I applied for psychological testing, and the neurologist meanwhile decided to make an MRI scan. And then there was that awful moment when I got the results. I feared that I would at some point get an MS relapse that would affect my mind. But it was even worse; I suffer from brain atrophy, and the cognitive impairments are a result of shrinking brains! I must have my ‘head', my cognition, in order to feel someone. I have studied all my life and have worked in an academic environment. I cannot live without a functioning brain.
The regression of my brain causes small mistakes throughout the day. As a result, my daily shower sessions consist of a chain of ‘issues'. In the shower, I no longer know which side of the thermostatic I should turn to get water, and after I've shaved my right leg I do not remember whether my left leg has already been shaven, I must touch it first to assess this. In a split second, I realize that my shaved leg will ‘infect' the other leg, as if it is a cold, and this will remove the hairs of my unshaven leg. I almost blush now of this ridiculous idea. I stand on scales to weigh myself and try to tell from the circular dial what time it is. ‘Ah, this is a balance’, I tell myself. ‘The dial tells me how much I weigh’, I say to myself in silence, but meanwhile my brain is still trying in secret to solve the riddle what time it is: ‘This could be a balance, but what time is it?’.
More and more often something goes wrong. Examples? Every morning I put porridge in a bowl, put it in the microwave, but I do not know how much power I should use and how long I should heat it. The coffee is ready and I put my jug in the fridge. I try to figure out why there is no cold water from the kitchen tap; well because I was mixing it with warm water. I want to strain the cooked macaroni, but strain the water into the other pan with the sauce (and only realize this mistake when I see the minced meat and veggies float to the top).
They are always minor issues, barely worth mentioning, if it were not for the fact that they make me terribly insecure. Usually, I realize just in time what I think or do wrong, just before I say it out loud or before anyone notices them. The feeling I am left with after having done something ‘stupid' is very annoying: I'm shocked, feel confused, embarrassed and annoyed. Although everyone is trying to reassure me, ranging from ‘I have those lapses as well’ to ‘there is no harm done, is there?’ I know it is getting worse. In my mind, I know I do not have to be ashamed of all these stupid big and small issues, but I do. I do not know how to behave. I, the clever scientist who acts so stupidly. I am mortally ashamed.
The risk of getting dementia has always been a terribly fearful prospect to me, but now it's not nearly like I had thought it would be like. I had expected a sliding scale of increasing forgetfulness, but the forgetfulness I expected is not the main ingredient of my new condition. The continuously emergent moments of foolishness characterize my dementia. In-between the ‘dumb’ incidents, my life remains just normal, and I am myself just as I have always been. Yes, the number of incidents increase, but in between those moments I'm still my old self.
‘I think, therefore I am’, said Descartes and that is just as it is, right? My body may often be at a standstill, but as long as I think, I exist. But what if I occasionally cannot think? It is an extremely alarming feeling, I tell no one. Now everything I think I need to check first. Everything I say I need to check in advance. Just imagine that if my surroundings would realise I cannot think, do they then also think that I no longer exist? I cannot show them.