Where does the time go?
Well in the case where you have any memory issues that is perplexing concept sometimes for many reasons. Firstly, everything you do takes a lot longer than it used to and secondly often you don't remember doing all of the things that you do in a day. So then all of a sudden hours or perhaps the whole day is just gone and you wonder what did you accomplish! Now I know that in a general sense, I have marveled at the concept of how time seems to fly in life long before I had any symptoms, now imagine the same thing except you can't remember if you just did what you set out to do in the first place or why it took you hours to do something that you had planned on taking 15 minutes. These are the sorts of things that I deal with on a regular basis and it can be frustrating but I try not to let it get to me very much because I can't change it. No one truly understands nor could they understand what people like me (diagnosed with a dementia) go through, it is truly impossible to totally understand unless you experience your own version which are all at least somewhat different I might add. Just as we are all unique people, so are the paths of our disease and what we experience. Sure, there are things that most of us have in common and we usually have an instant bond from these shared experiences. There is something really soothing about people who know what you deal with, generally anyway, without having explaining anything to them. If you are someone new to a dementia diagnosis, I highly recommend joining DAI at www,.joindai.org and getting involved in a support group and other activities.
That's it for today, been a LONG time once again between blogging because I forget to even check my site let alone blog on it due to my advocacy and work to support DAI.
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........
PBS aired a documentary recently that I believe is still available at this time to watch from the PBS website. I watched it on the night that it aired here on Iowa Public Television. There had already been comments made in my social media circles by people that had viewed it before the actual broadcast and most of those comments were not flattering. I was anxious to judge for myself.
The documentary "Alzheimer's: Every Minute Counts" is available at this writing here: www.pbs.org/video/2365872329/ . Everyone can judge for themselves and it isn't that this documentary is untruthful., it is that it only presents the issues of later stage and acts as if all of those that live with a dementia diagnosis are quite quickly in this situation. It is true that all of us, given we live that long, well end up in late stage but so many people don't understand how long a very large number of people spend in the early to middle stages which looks quite different than anything portrayed in this film. It is this completely slanted and unbalanced picture that so many of us object to because what this films portrays leads to the feeling of hopelessness for those living with a diagnosis. Most of us living with a diagnosis very long are quite aware of what late or end stages looks like so we are not turning a blind eye on that by any stretch. In fact, much of our advocating has to do with better care for those people because we will be in their company one day. And professionals in the field such as G. Allen Power have said that the current methods of care can not be sustained in the future if predictions of the number of those affected by 2050 are anything close to realistic. And the reason it can't be sustained is because of the shear numbers of people diagnosed, it would be impossible from both the staffing of facilities and the financial burden to the country. So we must find ways to care for people that are both better for the person living with dementia and less of a burden both financially and to people caring for them. As he and many others point out, having a "cure" for the different types of dementia is a pipe dream as we understand them now. We don't even have a proven way to slow progression so that is obviously the first step. The logical first step is medicines or methods to slow or stop progression but this could very likely be different solutions for different types of dementia.
In the meantime many such as myself have decided to live as well as is possible with the disease. We have chosen not to be silent or just go away and let the disease consume us. But believe me, there are days that any of us would like to do just that when we are attacked in some way just as my good friend Kate Swaffer was recently when she was basically blackmailed by a gossip columnist to "prove" she had dementia. You can read her story here: kateswaffer.com/2017/01/30/the-darker-side-to-success/. This was inexcusable behavior by a journalist and this type of thing just can't be allowed to continue. So this is an extreme example but the point is that trying to live better with dementia isn't easy and when forces from the outside seemingly make it more difficult then it can quickly get to the point of wanting to just quit fighting. That is where education of the public comes in to being such an important part of the puzzle. It is imperative for people to realize that while it may "look simple" for us to do many of the things we continue to do, nothing is very simple anymore. Please don't jump to any conclusions about us based upon the fact that we continue to advocate for the best interests of all people that live with dementia. Instead learn a bit about each one of us you encounter and understand that while we may still accomplish some things, all of it takes a LOT of time compared to what it once did. So as usual with my writing, I digress. That is literally how my brain works now days though. It doesn't stay on a logical track to lay out my points because one thought can trigger another avenue and as I often tell myself, down the rabbit hole we go. This is my own internal speak for what happens even if I just look at something on for example Facebook or Twitter. I will encounter a post or tweet that links to something that will have me off on a detour for an extended period. Quite often when I really don't have the time to do that but too late, I have forgotten that I needed to watch my time! These are part of the unseen continual battles we continually fight to accomplish anything and sometimes we just get warn out from the fight. Please be sensitive to how difficult most things are for people with dementia even if they don't tell you. We can be very proud and we don't want sympathy but understanding is always helpful.
So to summarize about the documentary, what I objected to with the film is that it only focused on people with either late stage dementia and the gal that had the gene mutation that means she will definitely get Alzheimer's. This leaves out all of us in the early and middle stages that try to live better with dementia and that many of us advocate, network with others with dementia and do our best to still have a purpose. Now this focus fits well with the goal of trying to push for more federal funds for research and I agree that this budget should be substantially increased. But the method to getting to that point should NOT use methods which reinforce the stereotypes and myths and increase fear about the disease. When you increase fear around the disease it almost always increases fear of the people with the disease and it increases the fear people have when first diagnosed which is what many of us are trying to change. Thanks for reading!
Help support DAI this holiday season!
As the Treasurer of DAI one of the responsibilities that lands with me is to help facilitate the fundraising for the nonprofit. DAI is a US 501(c)(3) nonprofit so donations are tax deductible for US citizens. People outside the US should consult with their tax professional concerning this issue but we appreciate your donation no matter where you live because our work is international.
I have just started a new fundraiser through GoFundMe and people can either start their own fundraiser here www.gofundme.com/sign-up/?charity=146240 OR you can donate to the one I set up here: https://www.gofundme.com/DAIJRS
Thanks for reading!
It was, once again, a wonderful experience to be lucky enough to attend my third ADI Annual Conference, this one was held in Budapest, Hungary. Even nicer was that my two brothers accompanied me on the trip. We hadn't all traveled together since we were still kids basically and haven't seen each other near as much as I would prefer since both of our parents passed away. My wife and I had just spent about a week with my brothers and their spouses in March in Florida where one lives year around and the other has a vacation home so that was wonderful as well. Something that hopefully will happen with more regularity while I still have some quality of life left. But I digress as usual, if you have read much of my blogs, you will know this is situation normal for me these days.
ADI2016 was wonderful to see old friends, meet people in person that I felt like I knew well because of our online Zoom meetings for DAI, but in reality, had never met in person and meet lots of new people. For the third year in a row, DAI had a booth at the conference and I ended up at the booth a large amount of the time but was able to see a few key presentations like one by my colleague and DAI Chair Kate Swaffer, a key presentation by Peter Mittler concerning DAI's work on human rights issues for people with dementia and a wonderful presentation by DAI member Mary Radnofsky. I gave a "plenary" speech during the opening ceremonies for the inaugural Richard Taylor Lecture to honor the late Dr Richard Taylor who passed away in July of 2016 of cancer. Richard was a founding member of DAI and a great friend. Richard was truly a hero to so many of us that live with a dementia diagnosis because he, unlike me, was a dynamic speaker and also was a world class self-advocate which is just to say that he advocated for dementia related issues and had a dementia diagnosis. When being proper with English, we say we self-advocate because we live with the condition that we advocate for but frankly, I don't always make that distinction. It is one of pure semantics and not all that important in total scope of things in my view. So I was incredibly disappointed in myself with the job I did with my speech. There were many that congratulated me and said it was great but I know it wasn't and the biggest reason it wasn't is simple and clear to me. My type of frontal variant Alzheimer's started in the frontal lobe in what was described to me like the junction box for all brain function which is why all my initial symptoms had to do with executive function like multitasking, time management, staying on task, etc. Well now days (nearly nine years after diagnosis) I have some memory involvement as well and while still fairly minor comparatively, it gets scary when you add in new symptoms. So, when I contemplated 30 minutes or more of speaking time, it seemed like an eternity to fill and I researched, re-read things that Richard had written to me, things he had written to others and his book "Alzheimer's from the Inside Out" which was probably the first really big seller (for that type of book) that was written by someone living with dementia, probably of the Alzheimer's type. Then I wrote, re-wrote and then re-wrote again a speech while typing it in to the "speaker's notes" in my PowerPoint presentation which also included a 4 minute video of Richard speaking because I felt nothing less would do justice. Well I forgot one crucial element in the whole process and I felt so stupid when I began that speech because it fully occurred to me that I had NEVER actually timed how long of a speech I wrote and that got in my head and really gave me a bad case of nerves. Now I have spoken totally off the cuff to large groups before then but since being diagnosed and have never been very nervous about it, so this was new for me. It led to stumbling around many, many times through the information when I realized that I had far, far more speech than was realistic and then trying to edit on the fly. It was my worst nightmare. And I had placed SO MUCH importance in my own mind on this speech that it just made the feelings of nervousness almost unbearable. If you happen to have been one of the audience that evening, I apologize for what I consider really doing an injustice to the subject as I left out so many points that were extremely important to me to include. The speech I gave was not how I wanted it to go and I felt completely embarrassed by the job I did with it. I did learn one thing, I won't ever do another presentation without knowing exactly how long it takes to convey all the main points of what I want to convey. Gone are the days when I could always speak off the cuff on anything and be fine. I still don't like having a totally "canned" speech but it will have to be so much more planned in the future right down to timing and of course I have the problem of going off the rails so to speak if I don't have notes to keep me there so I know that is a necessity. The problem in Hungary was once I had to try to edit on the fly, I was hopelessly lost among at least 10 pages with notes more than I had time to cover and nerves would not allow me to re-cover. NOT a good situation if I didn't have dementia, but with dementia it was too much for me to recover from, this ship felt like it was sinking fast. People have told me that I am just being too critical of myself but I know it wasn't good, I know it was far from what I had planned, but once things seem to go off track with for me, it is REALLY hard to turn it all around and on this night seemingly impossible. So it would seem that I upset myself far more than anyone else, although it is hard to tell because people don't want to hurt your feelings. And I know if Richard was here, he would be telling me to let it go, so now it's time for me to actually let it go and just do better next time. I will never be a speaker of the quality that Richard was in his years after diagnosis, he had spent 20 years lecturing to college students and twice been voted teacher of the year so that incredible talent was in long term memory for Richard. I spent a career of speaking to one, two or maybe five people at a time while selling business to business and that always went more like a conversation where listening was more important than speaking. It was frankly a miracle to me the first time I spoke to a large group that I wasn't nervous, it seemed as if the disease had removed that burden. Well at least until Budapest. And add on to all of it the emotions involved that we had lost a great friend and mentor, and it was just too much for me to handle on this night. I could see my friend Kate become emotional which only added fuel to the fire and made concentration too much to ask, I just felt like I needed to get off the stage with my life instead of feeling gratified that I had paid substantial homage to our friend or even fairly describe DAI of which he helped create.
So overall the conference was once again a great experience, the speech was a "painful" experience but I have to remember, I'm letting that one go now. I also want to mention that a booth near us was one that belonged to a group named WYLD or World Young Leaders on Dementia and they were such a breath of fresh air. They are our future in the dementia field and it was awesome to meet some of these incredibly bright young people! I think it was a spectacular idea whoever started this organization to connect these great young people to network together around the world. I would like to give a shout out to Rebekah Churchyard with whom my brother and I had breakfast with one morning when she invited us to sit at her table, I had met her the previous day when she was working at their booth. She is a shining example of what these young people are all about and it gives me renewed hope about our young professionals.
Be sure to visit DAI's site by clicking here and read the blog page to catch up with what is going on as well as lots of other content on the site, check it out. We always offer FREE membership to anyone with a dementia diagnosis and welcome all others to connect with us by subscribing to our mailing list and subscribing to our blog.
Leap Year Day Post
Well I have repeatedly tried to make it a new habit to blog much more often and as you can tell, failed miserably. I am going to make a renewed effort to blog more often, I have a number of problems that throw roadblocks in my way to blogging regularly. First and foremost are my particular symptoms from atypical Alzheimer's Disease. It started in the frontal lobe in an area described as like a junction box for all other brain function which is why my executive function took the big hit first. Things like time management and multi-tasking which were crucial to my career were becoming increasingly difficult. Functions that I took totally for granted in the past were now becoming a struggle.
But I digress, which is another problem for me, staying on the right path to say what I mean to say which can also be a challenge and that gets a little harder all the time but at rates that are slow and often hard to notice. I have minor memory issues now which I did not have early in my diagnosis but they are still relatively minor and alone would possibly not be cause for major alarm. This will change in time and it is painful to think about so I mostly I don't think about it. So, now we have my problems with executive function mixed with forgetting that I wanted to make it a focus to blog more often and then you pile on my perfectionism which doesn't really mix well with my decline in abilities at all. This all leads to what I think some people living with a dementia diagnosis experience, avoiding the tasks that are painful or difficult in some way, whether consciously or subconsciously. After all, we are supposed to reduce stress as part of our regimens so if something is overly stressful we are supposed to forgo doing it. See, I can justify things very well! And it is SO important for people who aren't living with dementia to understand that what is hard for one person living with a dementia diagnosis isn't necessarily hard for another.
One of our biggest misconceptions to overcome is that we all experience the same symptoms which couldn't be further from the truth. Do we all have some similarities in experience that bonds us together? Yes, absolutely, but the precise symptoms vary drastically not only from one type of dementia to another but also from one person to another within the same diagnosis so what would seem simple in concept is hard to really get people to understand, we are all unique just like any other humans. We are not defined by the disease but rather our abilities are affected by the disease in increasing amounts but we are the still the same people within. Can and does it affect our personalities? Yes, but I would argue that inside our own perception of our inner self is still similar and that sometimes when I realize ways that I have changed in someone else's perception that it makes me very sad. Often this is because I don't naturally smile the way I did most of my life making it seem like I might be unhappy or angry, I am not quite as easy going as I usually was, I don't always get the joke, let alone be the author of the joke in the spur of the moment as I was most of my life.
The fact that when we are in very late stage, we do resemble one another in symptoms a great deal more than at any other time is true but this gets completely twisted in to beliefs that we are all so similar through the entire disease process and that these symptoms somehow make us similar people and that is absurd. And way, way too often as soon as someone hears you have dementia, you are discounted or devalued on your thoughts or opinions. After all, they are demented thoughts, right? Well technically, yes, but they are still our thoughts and just as valuable as anyone's thoughts I would argue. Now it made me hurt a bit to say "demented thoughts" because the word demented is so stigmatized that it is hard to explain and yet that is a word that many of us have owned and learned to live with. I had and still do have some of those stigmas in my own mind about the word demented especially and was completely mortified recently to see a movie description say a "demented man" and they were using the word in a way as to portray scary or criminally psychotic which is completely the incorrect usage of the word. But so many people grew up with common use of the word in that manner that it has become a major re-education to get people to realize they are stigmatizing something close to 47 million people on Earth when they use the word that way. It is definitely a process and one that never moves as fast as those affected the most wish it would move. By the way, my junior high English teacher would want all of you to also remember not to say "irregardless" even though some have tried to make it part of the English language since I was in junior high. But in reality, that is a double negative, the word should be "regardless" if you don't want English teachers (especially older ones) grimacing somewhere along with their students that took it to heart.
When a group of us were in planning and discussions to start an organization that was actually controlled and run by people living with a diagnosis there was no other word we were aware of that both encompassed all of the different related cognitive diseases that are untreatable AND widely understood as to its meaning other than dementia. So we came to the conclusion that the word "dementia" must be in our name and Dementia Alliance International was born.
Recently one of my fellow founding members of DAI (and currently a Chair), Kate Swaffer, was named to the World Dementia Council and I would like to publicly congratulate her on this achievement. DAI urged the World Dementia Council to add members that live with a diagnosis when there were none and now Kate becomes the second person with a diagnosis to join the council. Hilary Doxford, a DAI member, is the first and other member of the council that lives with a diagnosis. Major achievements in the right direction for our goal of "nothing about us without us".
So if you are reading this, thanks, I am flattered anyone cares frankly, but it all boils down to that I have not written much because with my other priorities and responsibilities, it leaves a limited amount of time and because both reading and writing have gotten so much harder for me that they used to be and take a long time compared to the past. I also let perfectionism of both my writing and the content get in the way of writing very often, hopefully I can try to do better. I guess today was a good day because I was able to accomplish this without it taking all day.
World Dementia Awareness Month!
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 at it's best.
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.
ADI2014 What an experience!
It was an overwhelming experience to put it mildly attending my first ever ADI Annual Conference! Some of my colleagues in DAI have attended numerous times but it was a first for me. And to have my first so ground breaking was quite the experience.
A very flattering independent piece came to my attention today about the conference that you can read about here.
Pictured above is Gill Phillips (a member of our advisory board) and Kate Swaffer who is on the Board and a founding member. We had a dream, some of us for quite some time, some a newer dream just last year that is now seeming to be steam rolling at a mind boggling pace. That is the organization we have started, Dementia Alliance International. We started talking and dreaming about it late last year and have said that officially it started in January 2014 although we are still working on much of the legal structure and legal standing of the organization. It has been a daunting task since ALL of the board of directors live with some form of dementia. We all have cognitive deficits and we have tried very hard to be accommodating to those deficits and work to function as a collaborative brain, so to speak, on all of our work to form this group.
Yes, we have already ruffled a few feathers but within the so called enlightened group of people there remains an astonishing amount of stigmas, misconceptions and the reinforcement of these beliefs. While many things that are completely a "DUH" moment for us that quite distinguished professionals present at these conferences as if they had discovered some highly sought after scientific discovery could have been simply answered by most people that I network with that live with dementia. This remains something bizarre to most of us because we are so rarely asked things assuming that we have dementia therefore we are not capable of rational, unique thoughts or inspirational things on how to live well with dementia, how to be the best possible caregivers and many other issues so critical to all of us that concern quality of life for people living with dementia. As my great friend and colleague in DAI Richard Taylor, PhD would say "you are not any closer to death than you were the day before you were diagnosed" and "we are going to die most likely because of dementia but guess what, all the rest of you are going to die too". We are just changing in ways the rest of you aren't, we have increasing disabilities and the sooner it is looked at that way instead of the stigmas, misunderstandings and complete lies the better for all of us living with dementia. We desperately need others to enable us, not further disable us! When someone is worried about us they need to not think ok, we take that away from them, they need to think how can I reduce the danger or how can I make it easier for them to do what makes them happy, what gives their life purpose and feel like a full human being.
The WORST thing we ALL hate is the common thing we hear about someone in later stage that they are "gone"! Really, they are right there, what do you mean gone? That is the biggest insult in the world. They might not be able to remember what your name is, perhaps they have lost the ability to speak but NEVER assume they don't understand what you are saying because the pure fact is no one knows! I believe it is the single biggest reason for what some see as problem behavior in care facilities, the person is so unhappy with their lack of purpose, joy and freedom but they can not express any of it in writing or verbal context. How might you react to being locked in a prison by beings that did not speak or understand your language, hand gestures or anything else? Stop and think about that point for a while and reflect upon it because that very well is what they are experiencing. Some are much better natured about their existence outwardly but there is NO question in my mind that people decline at a MUCH faster rate as soon as they are locked in to most of these facilities. They also decline at a much faster rate when all purpose and sense of freedom is taken no matter where they are living. Richard Taylor is convinced after 13 or more years in to a diagnosis that his continuing purpose of self-advocating, speaking and traveling, often by himself, is the single most important reason he is still so engaged and able to continue what he does which is amazing to those who hear him speak. I shared a room with him at the conference and it was an incredibly joyful time to spend so much time talking one on one since that had often been limited in our interactions with the organization. Another thing people absolutely must understand is that anyone else living with dementia has an instantaneous bond with others also living with dementia. It is why I started a secret support group made up of ONLY those living with dementia a couple of years ago. It continues to be a lifeline for those who live with dementia to be able to openly voice fears, struggles, frustrations and yes, lots of humor. I bet you think we lose that ability, right? Another misconception because there is wonderful, sometimes warped humor with us. We laugh at ourselves and we laugh at the ignorance around us about our condition. We make fun about the times when we as people with cognitive deficits can't hardly comprehend how ill advised the actions are of those who are supposed to be quite distinguished, educated and powerful and yet we are supposed to be the people you can't trust with decisions, yeah right.
The hugely disheartening thing about the conference which was held in San Juan, Puerto Rico was that in Latin America there is so much stigma that anyone diagnosed doesn't dare be public about it. It is still thought to be some type of insanity by the masses and you are shunned, perhaps locked up but always stigmatized to a level that is intolerable by anyone enlightened. Yes, there is so much work to be done in the US but there is even larger mountains in some countries but the encouraging thing is the countries that are doing wonderful things! The UK is making progress and having discussions that the US doesn't even seem to know they should have. Some of the Netherlands countries are doing amazing things as well as many other countries. So yes, things are slowly changing in some places but it is far too slow in the US, someplace that used to think of itself as a world leader on freedom issues yet we continue to stigmatize this disease, restrain the people with the disease both physically and chemically which, by the way, is now the most expensive disease in the US. Please help me my friends in a movement for change!
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