On March 6, 2019, Sylvie learned that she had Alzheimer’s disease. She is only 49 years old, which is very young for this pathology which mainly affects people over 60 years old. A story to discover in Forbidden Zone, Sunday March 6 at 9:10 p.m.
Before the diagnosis, had you thought about Alzheimer’s disease?
Sylvia: Not at all, especially since I had a very good memory for a long time. As a nurse’s aide, I effortlessly remembered the names of my patients, their medications. It’s just that at some point, things went wrong. I was washing a patient and came back thirty minutes later telling him “hello sir, I’m coming for the toilet” ; I got lost in the corridors of the rehabilitation center that I knew by heart… I put it down to my physical exhaustion, I thought I was going to burn out, have depression… But the antidepressants didn’t change anything.
What finally pushes you to consult a neurologist?
One evening, in my bed, I lost sight in my right eye for fifteen minutes. A cervical MRI revealed brain atrophy, and months later a spinal tap showed Alzheimer’s.
What does this doctor tell you?
He was extremely benevolent, told me that I was young, that the disease was just beginning… But he still signed me on sick leave, telling me: “You won’t be working any more anyway.” It was a double shock in a way.
What are the effects of the disease on your daily life?
My attention is no longer reliable: I can forget to drink, to take my medication, to eat. I can let a dish burn in the oven or start cooking a cauliflower in a casserole dish without water… sit on the passenger side! My mother takes me back: “No, no, you’re driving my daughter!” and it comes back to me! (She laughs.) We also laugh about it anyway…
Your husband sometimes has to go on the move for his work, can you still stay alone at home?
My mother moved near me, she is a great support but I don’t want to exhaust her. I should take care of her, not the other way around. So I put things in place, gradually. I don’t want to wait because I know there will be a phase where I don’t necessarily want help and that would be hard on my husband. I have a carer who comes by every day and helps me in particular with the preparation of meals. She supervises.
How do you remember things to do?
Post-its, alarms, and above all Alexa (personal assistant developed by Amazon, editor’s note): I ask him to remind me to take the dishes out of the oven, etc. I also take part in the France Alzheimer* workshops which give us daily tips, and I have the help of the ESA (Specialized Alzheimer’s team, editor’s note) which makes me do arithmetic exercises: giving change, filling out a check, it has become complicated. And they also advised me to write down three or four words every evening symbolizing things I did during the day and on the weekend. From these words, I try to write my diary.
Is the disease attacking your old memories?
No, I also saw videos of our son’s birth with my husband and everything came back to me without difficulty. On the other hand, if I attack a novel today, my memory will not fix what I read. So I have to keep coming back to the first page. But I’m not giving up, there is bound to be a solution!
*Francealzheimer.org
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