September is World Dementia Awareness Month. In observance of that Dementia Alliance International (DAI) is presenting a series of "classes" about topics of interest from the viewpoint of those of us that live with dementia. We are also having a panel discussion later this month on the "myths of dementia" and believe me, there are some big ones. You can register for the presentations or as we named them "Master Classes" here. I apologize if my last blog post sounded a bit down, I have been feeling a little under the weather and that probably came off in my writing. I am trying to post a great deal more this month in recognition of Dementia Awareness Month.
One thing that came to mind today is that anyone new to a diagnosis needs to NOT read anything online about timelines or expectations with dementia. There are many professionals that want to talk averages or expected timelines and that does a very large disservice to someone diagnosed. NO ONE knows what your progression will look like or the speed of it. That is something that is HIGHLY individual and my online support group has dozens of people that absolutely trash all statistics and averages. Perhaps part of that is because all of them are people who are doing their best to stay engaged with others, keep their minds challenged and be social. It is such a challenge with any of these diseases to do what is best for us, that is the catch 22. What evidence suggests is that staying socially engaged, keeping your mind very active is what is best to slow progression. On the other hand the things that get in the way are apathy, our friends from before diagnosis tend to pull away and there are precious few chances to be very social for many of us. Perhaps that is why I jumped early at chances to be involved in advocacy and speaking to groups, attending conferences, anything else that forced me to be out and with other people. It does get harder as time goes by to push yourself to be out of the house more, it really does and I know why people end up not wanting to leave home for anything. That is why it is so hard to do what is thought to be the best things for us. So if you have someone in your life with dementia that is hard to get out of the house, understand that it is out of their comfort zone. I think you should try to get them to want to go somewhere but please be understanding with how hard it is for them to push themselves outside of their comfort zone.
So anyway, that is about it for today. I am ending up this blog post a LONG time after I started it. Got diverted for something and didn't remember I had started it until I noticed the tab open with the part above written. And so it goes with dementia. Have a great weekend and be good to one another.
This is just a note to illustrate how frustrating things can be for us. I am someone who has always been intensely interested in computers, using them from the time of the Apple II. I have built my own PC desktops, played with a lot of software over the years just to see how it works and love technology. But when I went to post the procrastination post below, somehow they have changed it so when it said publish I hit that button but it saved to my drafts folder. Well I never had anything in the drafts folder before and to me it was gone! I contacted support and was frantic because writing anything is a major process for me. Well they found it in drafts and they have changed something because it did the same thing the second time, only when I hit publish live did it go on my public blog. Weird. Anyway, there went another hour or more. :-)
Procrastination is nothing new to me, I have lived my entire life battling it. I often wondered if I enjoyed the exhilaration of having to be panicked about getting something done on time. Because I would do the same thing over and over, push things until I had to hurry to get it done on schedule. Now living with dementia it can be a very hard dragon to slay some days. It requires so much push to do things that other people take for granted some days. I do my best to "Live Well with Dementia" and try to always emulate that but there is also the reality side of living with this disease. Mine is so peculiar compared to many others living with dementia around me, I have minor memory problems but nothing major yet, what I have is major trouble with executive function that just keeps getting worse. I do just about everything they suggest to slow progression and to be fair, my progression is very slow compared to many people but that is the nature of the disease as well. My father had very slow progression so I have to believe that this form of Alzheimer's that starts in an atypical part of the frontal lobe is, or at least can be, very slow to develop. It is something that is highly individual for everyone. Don't ever let a professional or something you read or anyone else try to give you some type of timeline because no one knows. There are so many variables with progression and the mysteries of these diseases and brain are still more vast than what is known.
So I thought I would write about procrastination as a starter today because I have always wanted to blog much more than I do but I put it off and then everything else gets in the way of ever getting it done. With me and many others that I interact with regularly everything that we can still do takes us far longer than it used to take. We make mistakes we would have never made in the past, it can get very frustrating because we are aware that something that used to be simple and taken for granted is now challenging. So many people think that if you have dementia you are unaware of things and this is just blatantly false. Our reactions to things are sometimes blunted and sometimes we just ignore some things and yes, we do miss some things we wouldn't have in the past but we are still here. What we need is for people to understand that we are here, in our ever changing world, doing the best we can to adapt to the changes but it isn't easy, no it isn't easy. We don't want you to feel sorry for us though, what most of us want is understanding and gentle assistance when we need it most.
I am struck by the stories I hear from others living with dementia about their families or friends not intervening when they should know it is a situation that is going to be a bigger challenge than we can handle or knowing the person living with dementia is best here, perhaps offer to help them. Instead I hear of people just standing there and watching us struggle with something and fail in public, often we might not think quick enough to ask someone else to do it or perhaps we feel embarrassed to admit that what we were asked to do is too much for us to handle. But if people that know what we are dealing with just ask to help or if the person living with dementia prefers, just take over things that are beyond what they feel like they can handle. But the key thing is to ask them, don't ever assume. I think we all know the old saying about assuming. We do want to be ENABLED to do things but when we are in public and someone asks us to do something that the people with us know might be a challenge for us then that means to say "can I help you with that?" That short little question could make all the difference. If they feel comfortable with what they want to do then they will tell you no, I've got it. It is important for us to stay active, stay engaged in things and believe me, this can be a major challenge for all of us so it is often a constant fight with yourself. We also have to balance things as well because when we overdo on things then we are exhausted for a long period just from the mental exhaustion. I often think the mental exhaustion is much worse than physical, a little sleep doesn't fix it as easy. It takes some time of slowing down to recover. I often forget to take things more paced than I used to do and end up in trouble. Just another battle I fight on a continual basis. But I am not complaining mind you, this is to help others understand what at least I go through with the disease. And I can't even begin to explain in one short blog post because it is bizarre at times. Just like traveling in to space perhaps, uncharted territory for us that can be scary at times.
This is all to tell you one thing, someone living with dementia is always dealing with cognitive battles on the inside that only they can tell you about, they aren't obvious from the outside. People often think that anyone in early stage couldn't possibly have dementia because their vision of dementia is only about end stage. This is our number one problem with public perception. The sooner we can change public perception the better it will be for all of us living with dementia. We don't start out at that stage and some of us take a LONG time until we get there. Some of us also believe that there is a group of things you can do to lengthen that time including keeping your mind very engaged, challenged, stay social and physically active, eat well and get plenty of rest. That may very well do more for dementia progress than any of the pharmaceuticals on the market to this point. Especially for some people because the drugs only work for part of the people, definitely not everyone. And for those unfamiliar, they don't slow the progression at all, they merely treat the symptoms to try to improve quality of life. So this other list of things is more important than the drugs in my opinion and I know of some people that agree with me.
All of this leads me to, it is "World Dementia Awareness Month"! So we at Dementia Alliance International, the only organization that is "of, by and for people with dementia" is having many events in September 2014, check them out here.
Have a great day and remember to stay engaged talking to and doing things with anyone in your life living with dementia, we ARE still here! Contrary to what some would have you believe we have increasing disabilities and a terminal disease but to say we are "fading away" does the biggest disservice to us that could be done. That gives people the idea that as we lose abilities to communicate it is ok to just disengage with us. That perhaps is one of the crueler thing continually happening because we need engagement with you in whatever manner possible. If that is a touch and smile, great. You can talk to us as well even if we can't answer, it really is fine.
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