Would like to talk about FTD : frontotemporal dementia.
It's almost 5am, and I saw a video talking about it and I'm a bit emotional. I'm sorry, I need to vent. I need to tell my story. It's a bit long and badly written, I'm sorry.
I have lost my grandmother to FTD in March this year, and she had just celebrated her 93th birthday. Doctors said it is impressive that it came this late (it usually occurs at 50-60 years old), but I'm not happy with those doctors.
My grandmother started showing signs in October 2025 by singing while talking, then showing aggressive episodes towards nurses in the nursing home. I caught quickly that something was wrong and shared my worries with my mother who, of course, denied. It was impossible for my mother that she could have dementia, maybe Alzheimer's.
My mother later in 2025, by seeing that it slowly became worse (more and more aggressive, she would talk NON-STOP, she would not eat/drink for a few days,...), finally share her own concerns about the matter to the generalist. That same generalist said it was nothing to worry about and going to the hospital doing tests would be useless. She made my mother paranoid about going to the hospital, telling her that my grandma would surely get an infection/bacteria and never coming back from there. So no hospital visit. I believe it was the biggest mistake of that doctor's career.
End of January 2026, I finished my exam and was visiting her. It was the last time she would recognize me. She kept talking about incoherent stuff both in french (native language) and wallon (typical dialect in Belgium), about her past, her present, about dead people she thought were still alive... And singing.
February, we celebrated her 93th birthday on the 13th. Some extended family members came from the other side of the country to celebrate with us. It was already too late. My grandma was unresponsive to our celebrations, and was weirdly silent for once. She kept looking at the turned off television and said some of her weird stuff. That day, she didn't recognize me. When we left, I had my own confirmation that she showed clear signs of dementia. On the same night, we received a call at 9 or 10pm from the nursing home that she had a massive aggressive meltdown and assaulted 2 nurses. My mother and I rushed there and I witnessed for the first time one of her first crisis. It got worse within the month. At some point, for 2 weeks, my mom and I visited her every day after work/school, even if I had a 12 hour long day, I would go.
But she never got better. It became worst.I cried. A lot. It was terrifying to see my lovely grandmother suddenly screaming, kicking, scratching people. At this moment I felt like a coward, a very shitty person, but I decided that I would visit her less.
In 2 weeks, her state declined harshly and had to get hospitalised. A very traumatic memory. I visited her once in the hospital and I couldn't do it anymore. It was too difficult, too painful to witness.
She was in a camisole. Her face was so dirty because nurses tried in vain to feed her. She stopped eating/drinking/sleeping completely, kept talking and talking and talking, but the most horrible part was that she screamed my name for hours but didn't recognize me. I was there. At the feet of her bed. But I was reduced to a name without a face.
When she had to go back to the nursing home, she wasn't the same physically anymore. She was so thin, we could see her bones, and her wonderful face aged drastically.
She lived 2 painful weeks before passing away on the 26th March at 12:10am in her room, alone. She had no strength anymore. I was at university presenting geology to potential new students and was having quite a good day. I was with my friends talking about things I love. I'll always remember the face of my father when I came back home.
It is a traumatic event for my mother, and I believe she will never recover from that.
At the funeral home, we were allowed to say our goodbyes before closing the coffin. Her body was so, so cold. But I was under the impression that she was napping and would wake up and greet us with her beautiful smile and her sparkling eyes. I will never see that again.
We put plenty of pictures of our family in the coffin, I put a drawing I did as a little girl which she kept close to her bed, I put a scarf that I had crocheted for her earlier and I gave her one of my necklaces.
The hardest part ? Leaving the cemetery while they buried her coffin (we couldn't stay because they had to manipulate the coffin of her late husband that was already there which is 42 years old). It was so hard to turn my back on her.
Je t'aime mamie, je t'aime de tout mon cœur et je sais que tu ne voudrais pas me voir pleurer mais ta disparition a été une des épreuves les plus dures de ma vie.
Ma mamie chérie je t'aime. J'espère que tu es avec bonne-maman, ton frère, tes parents, marraine Monique, tante Jeanne, pépé Richard, ton amant, Milou et la grand-mère de Zoé et que vous veillez sur nous. J'espère que tu es heureuse et que tu peux a nouveau danser et chanter jusque pas d'heure de la nuit. Que tu puisses voyager à nouveau.
Je t'aime et je te fais mille millions de mille milliards de bisous. Je t'aime fort. Je pense beaucoup à toi. J'aimerais tellement te prendre dans mes bras et te brosser les cheveux comme je faisais avant.
