Yesterday I started late with blogging, and with the fuzzy brain I’m experiencing later in the day, and a few wonderful interruptions with friends, it was a late posting, which I had trouble formatting! I’ve been thinking a lot about the disability of not being able to remember – or recall – things about your own life, and about the world in general. To begin with, it is easy to compensate for, and no-one notices the act of not being able to remember or recall something, or to find the right word for something. We rely on so much non verbal communication too, so in the early stages of dementia it is not as noticeable. I watched a movie or program the other night, and according to my dear husband (BUB), as with most things now, I had seen it before. In fact watching many things on TV now frustrates me as I have this undercurrent of the feeling I’ve probably seen it before, even though I may not remember it. And then of course, much of the time, I can’t keep up with the story anyway.
Reading is more difficult as I find it challenging to read a book in one sitting which is what I need to do now for it to make sense. This is because when I pick one up to continue reading, I need to start again, or else I need to write reading logs for everything I read, which can take away the pleasure of reading. I also need the dictionary close by as have forgotten the meaning of so many words and things. Reading is one of my all time favourite pleasures, so I push myself to keep doing it, and have found ways to enjoy it anyway. But back to a movie or television program, or a book for that matter. When we participate in these activities, we invest ourselves in them, we rely on our memory or ability to understand the meaning of words not only to make sense of it, but to help keep in perspective what we have seen or read. Our memory, or ability to recall is imperative to be able to do this. Not remembering all the parts of ones days and many parts of ones life now, means people with dementia have a limited ability to invest in themselves as they lose the sense of who they are, just like if you miss a part of a movie, or don’t read every chapter in a book, it doesn’t make as much sense.
With not remembering, there are also some days a person with dementia won’t eat all day because they forget to, and other days they eat a meal twice, because they wonder if they have eaten at all. Now the sense of eating is not based on feeling full or hungry, but on some random idea it ‘must be time to eat’. Ordering coffee at a cafe for others is a challenge now, and last week although it seemed so simple, by the time I got to the counter, I had already forgotten what my girlfriends wanted. Luckily they are accepting and kind, and made no fuss of me referring the person taking the order to them. For some people with dementia, this might seem trivial, but for me, having had a near perfect memory, it is challenging to live with. I am used to it now, but don’t always find the humour in it. There are sure to be days ahead for me I won’t be quite so easily settled about it, and am told I may get angry with people like cafe attendants when ‘they’ confuse my order. Something to look forward to I suppose?
On the weekend my dear husband and I laughed so hard about – I have no idea now what – but something relating to a symptom of dementia, that we almost cried, and we both said, at least this bloody dementia is going to be fun. At least for now, we can both still laugh about the changes and the incidents caused by these changes. Most dementia service providers (e.g. aged care or dementia units, and other organisations and agencies), provide activities and social functions with loud music and too many sensory inputs. If people with dementia have trouble focusing and concentrating, and difficulty remembering, then it would seem logical not to do this, yet so many still persist with this assault on our senses. On top of that, they sometimes have activities (reminiscing) which require memory recall, and although many people with dementia are more impaired in their short-term memory, this is not always so.
The impact of not remembering affects medical care too, because it is so easy to forget why I am there, especially if I don’t have a written list. The other complicating factor is I have been seeing the same general practitioners and two specialists for many years now, and have a friendly relationship with them based on who I was and how I could perform before, and so it is easy to get off track about why I’m there as I’m so easily distracted due to the ease of our chatter. Knowing that I once had a deep knowledge of classical and jazz music, and now not being able to remember the name of a concerto, or a musician, or a singer, or an album is confronting and painful. It is tedious not being able to instantly recall the knowledge relating to having been a nurse, or a chef, and so many other things that were once instantly recalled.
There are so many things impacted by the disability of not remembering, things that were once automatic like driving and dressing, or remembering a face or moment, and these losses have the potential to make you feel like you are drowning as your world slowly disappears.