So today I had my second day of an online training for live in carer. When we were about to discuss dementia I decided to share my recent experience with mum: I said how I had to finally accept that she has dementia after her state deteriorated rapidly but just a few months ago her memory seemed to be intact. She would go to the shop without a shopping list and bought exactly what she needed, she remembered (and still does) what bills need to be paid and when the bin day is. She had problems with more sophisticated thinking but as she always was somehow disorganised and absentminded, I thought it’s just her.

And yet, when I was visiting her in the care home recently, where she had to be placed after a serious fall, I realised she at times talks nonsense. It was very difficult to accept the fact, that yes, that must be dementia.

And then the trainer thanked me and said it must have been difficult for me to share that and I felt rather invalidated (again – being invalidated is not an unusual experience for an autistic person).

No, talking about that was not difficult. If it was I wouldn’t even start. Experiencing it was difficult, but talking about it was easy and I was really eager to raise awareness of the fact that yes, it is possible to have dementia even if one’s memory seems to be unaffected.

The trainer’s comment was meant to make me feel better but instead made me feel worse. It seemed to me that the fact that I find it easy meant that I don’t care about my mum.

Similar situations happened to me so many times before: people trying to sympathise with emotions that I don’t experience make me feel really bad about myself.

At other times people ignore emotions that I do experience and that is equally bad.

As the training progressed we spoke about type of dementia where memory problems are not the first sign. Pointing this out by the trainer would be a reaction much more appropriate for how I felt.