I had an appointment with my new consultant since moving here.
She confirmed that she had read all of my background notes, which was helpful, so we chatted and then started on the testing.
Shapes, clock, sentences, instructions – no problem. Remembered three out of five words which was okay. Had trouble counting backwards from 100 in 7’s, got two wrong and she asked me if I wanted to try again, but it was not a day where my mathematical abilities was going to get any better so I said no! I have always had problems with numbers, they are just squiggles on a page to me. I never see patterns or logical progressions, I guess it might be dyscalculia. I have to concentrate on working out money these days in shops but it is not too bad.
We talked about my confusion with what day it is on a regular basis. So many people say to me, ‘Oh yes I am like that all the time’, and it is difficult for them to understand what it means when you have dementia.
So, what is the confusion like? I have a calendar that I write on (most!) all of the time, appointments, visiting Dad, visiting my daughter etc. I go to Dad’s and a few days later come back, so say I go on a Sunday I return on Wednesday or Thursday. He wants me to stay so I return on Thursday. Simple? Well not quite; my brother and sister in law may come to lunch on Sunday, so I know its Sunday. Next day I get up and struggle to know whether it is Monday or Tuesday because I can’t remember if we all had dinner together yesterday or the day before. My anchor has slipped and so I enter a time warp.
We anchor ourselves by what we do on certain days; what we see on television, where we go and who we see, but what if your memory is such that yesterday becomes forgotten? You lose your anchor immediately. Most people who say they cannot remember what day it is, usually knows what they did in the previous days so it is really just a confusing blip and they could work it out quite well. Correct me if you think that’s incorrect.
For me I get very confused/forget about what I did the day/s before so I am immediately lost in a time warp of my own creation. Does it help to look at a calendar, not really unless I have remembered to cross off the days (which I rarely do). I could look at my mobile phone and see the date, yes that’s it, then will forget later on that day again! Sometimes I just cannot hold a memory in my head for love nor money. So this morning I know it is Sunday, but later I may wonder……
If I had someone living with me they could remind me of what I/we did yesterday and last week and tell me the day, alone I have to try and put other things in place which of course I can only rely on myself to remember to do.
1. I have now bought a white board with days of the week on which is stuck on my wall near the chair that I sit in (similar to this) – I can write down my week, cross off the days (if I remember) and see at a glance whether I have any appointments and see if it helps me know what day it is.
2. One aid I could get is a clock with the day and date on – they are expensive but which is something I will aim to do
The good news is that she said I had not progressed any further since my diagnosis so I very was pleased with that.
Maintaining the level I am at is important to me because it means I can get more things in place whilst I still can.