Keeping it all straight when your mind isn't!

So this is a topic talked about at length among those of us living with a dementia diagnosis that are interested in living better with dementia. How do I compensate or enable myself to keep doing meaningful things? This can be difficult at times depending on what symptoms and how far you have progressed. It also is understandably in flux because while it may seem that your symptoms don't change for an extended period, the disease itself is almost always progressing at the same speed. That speed is different for everyone however so if you are someone else with dementia, don't pay any attention to anyone trying to give you timelines or life expectancy and don't seek out this type of information. Chances are that it is either vague or outdated and in either case not something accurate. When I was first diagnosed in 2007 with FTD (not my current diagnosis) I wasn't told a lot except given the feeling that things were going to change rapidly. I went home and searched things on the Internet and most things said I would live something like 5-7 years. I HOPE there isn't such erroneous information out there now days, that isn't to say no one dies of dementia that quickly, I have known a few, but it is certainly the exception rather than the rule! I will hit 10 years this year since diagnosis and I still have a great quality of life and know people that have been diagnosed for 20-25 years and are still going strong, NOT in a care facility and still somewhat independent. It is possible so please don't start thinking there is any rule to dementia because there isn't and really the ONLY decent way of predicting is a professional looking at scans done at certain intervals to see the rate of progression but that STILL doesn't tell the whole story. Some people have remained very functional when their scan would seem to infer differently. So the best rule about all of that is DON"T HAVE ANY RULES. Now, you still should plan for the future because ALL of us with dementia, barring the discovery of something that stops or slows progression, are going to get to a point where we need a LOT Of help. This part is VERY scary to most of us so you aren't alone if you are scared when you think about that. The best thing I have found for myself is to never dwell on the subject by living each day in the present and trying to make the most out of it. It is similar to theories used in 12 step programs when they say "one day at a time" because it is too scary to think beyond that and a trap for the mind. Planing for the future is fine for people but the problem with anyone, not just people with dementia, dwelling on that much is there are absolutely no guarantees about the future. Any of us could die at any moment or as with me, have a completely life changing diagnosis that demolishes any previously held ideas about the golden years of retirement. That isn't to say you shouldn't plan for the future, it is just to keep things in perspective and let's just say don't count your chickens before they hatch. 

So one of my main symptoms to this point has to do with certain parts of executive function, like staying on track, on task or completing more complex trains of thought through writing. I am sure you can see signs of this in my writing on this blog. Often I think I have shied away from blogging much because I am NEVER happy with what I write now days. I spent a lot of years writing things that many people would read as part of my career and have always had a bit of perfectionist in me so if I start reviewing or revising any of my writing now days, it will likely just stay in draft form until I eventually delete it. I have done that many times, especially when I started writing something, got interrupted and by the time I discover the draft, I am not really sure where I was going with it or feel like it is just outdated, or maybe it is just that it is too painful to try to review it and add to it to publish it. All of those things could be a play. I also make major mistakes with proper English now days and if I review it and see that, it drives me crazy. Better to just write something and publish, it is mainly for me anyway so who cares? I also have had to convince myself that I am not trying to write anything earth shattering here or maybe even interesting to most people, it is just a good exercise for my brain and maybe preserves a bit of history with my journey for family. 

So I started out intending to talk about how to get around deficits the best we can which can be a huge subject but I will leave the rest of that for another time. Sorry to mislead with the title! Until next time........