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 perfectly fine. 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 for her house and if I agreed with her we will be doing a certain thing in a couple of days she’d remember it. She had problems with more sophisticated thinking but then, as she always was somehow disorganised and absentminded, I thought it’s just her plus normal aging.
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. I felt like I should be experiencing the situation in a different way, like the fact that I didn’t find talking about it difficult 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. I’ll make sure to post about that too when it happens.
As the training progressed I found out that in fact there is a type of dementia where memory problems are not the first sign, frontotemporal dementia, that usually affects younger people but can happen in elderly as well. Pointing this out by the trainer would be a reaction much more appropriate for how I felt, but then, again, there wasn’t any point in saying that. I just had to carry on with my feeling of being made wrong by the trainer’s good intentions.
I’m wondering now whether I in fact never heard about all those types of dementia? I was working in learning disability sector of care, not elderly but we had trainings about all aspects of care so possibly it was mentioned at some point but I forgot about it. As ironic as it may seem: forgetting about dementia.
Overall, realising that your loved one is affected by this illness is difficult. But then it would be difficult for any illness, but possibly in a different way.
I was talking to The Friend yesterday that now, when I’m back in the UK and I’m on my way to being employed again I’m glad that I moved mum to the private care home. That it has to be paid for? Oh well, people pay for care all over the world but at least mum has some more space to move around in her wheelchair, instead of spending entire days in bed, like in the government care home.
That brings me to this question: should we trust our feelings?
As I was organising mum’s care home transfer I was getting extremely stressed and worried, focusing a lot on the fact that one day her savings are going to run out and what I’m going to do then. On the day when the transfer was meant to happen I woke up with a strong urge to cancel everything and tell the nurse in the government care home that mum would have to stay there. The only reason that I didn’t do it was because I hate disturbing other people order of things. Avoiding that was far more important than listening to my feelings.
But now, when I’m back, I’m really glad I moved her. It’s her money after all that pay for that and I’d feel bad if I inherited it while knowing that I didn’t give her the best quality of life that she can have, considering the circumstances.
But yet, I can think of at least one situation when my feelings were warning me: when I was just about to start my empowerment with Home Group I was getting extremely worried and having the feeling like I wanted to escape the entire thing. At one time I had an anxiety attack on the bus only because a lady sitting next to me was using strong perfume and I was by the window so I couldn’t change seats. That was my first anxiety attact in my entire life.
But then, I explained to myself, that’s possibly because I just realised I’m autistic (I used to call it Asperger’s at the time) and it was absolutely life changing: it meant I’d never learn to fit in, no matter all the effor I make and, at the time, my entire life seemed to evolve around that: how to learn to fit in. It was 24/7 project of mine. I was hoping that with some effor I’d finally manage to fix myself.
So possibly my panicking was in fact caused by the realisation that I’m autistic and not by instinctive anticipation of what was meant to happen in Home Group a bit later.
Disclaimer: links to all the posts mentioning Home Group are sent to it’s CEO, Mark Henderson. He never replies.
Some are also send to prof Simon Baron-Cohen to ask him what to do so that similar situations never happen to autistics people again. He doesn’t reply either.