I have started a new Facebook page where I will post information on research, statistics and important advocacy issues. If you click on like on the page it will show up on your wall when there are new posts however not your friend's walls unless you comment or share things.
Please take a look and if it is something that is interesting to you please click like and follow the page. I encourage participation through posts, comments etc. See the link below.
Also, I have mentioned before, but I also have a secret support group limited to people diagnosed with dementia. If you are clinically diagnosed please send me a message through the contact me form on the website here with an e-mail address or another way for me to get back to you and once we learn a little about each other if you are interested I would be glad to add you to our group. It is not one of the real large groups out there but it is a very supportive group that allows those of us that are diagnosed to discuss things that people that are not diagnosed have trouble identifying with and also people feel free to say whatever is on their mind about the disease without feeling like they will be criticized.
The new FACEBOOK Page is https://www.facebook.com/AtypicalAlzheimersDisease
So the topic for today is frustration. I have been feeling a lot of it lately. Mainly all to do with trying to deal with consequences of my disease. Everything is harder now days. I struggle with things that used to be simple for me. I took for granted all of my life until after I was diagnosed my abilities and never really thought a lot about it. Now that I am losing them it is so difficult and mostly frustrating.
To have this disease and be self aware, which some people are not, is simply horrible at times. If you stop to think about the fact that you are slowly watching yourself disappear, it is incredibly hard. In fact, it is too overwhelming to dwell on, if I do I would be incapable of having any quality of life left. When I think about it, it is almost like a mourning process for the passing of the old me and trying to accept the new me and definitely is not a new and improved version of me.
I suppose trying to adapt to this disease is a bit like someone that loses their sight or ability to walk except that they usually have that same obstacle to keep working towards overcoming, ours is one that is ever changing and worsening with every tick of the clock. Prior to this year I knew that many abilities had been affected but I was still able to deal with it better than I can lately. I have had challenges this year that are so kind of in the face that it is hard to put them aside. It is a disease that continually makes you feel dumb.
When you continually get confused as to what you were going to do, or get sidetracked and never get back to what you were doing or lose what you were going to say before you get the chance to say it, that is so frustrating, frustration, the general topic of today's post. I try and try to manage my time but no matter what I do I am just incapable of managing it well. Time evaporates and I wonder where it went and how that much time could possibly pass and I hadn't gotten any of the things done that I intended. It is astronomically frustrating is the best I can think to say. I wish I had more answers, I always try to help others that suffer through support groups, especially one I started myself that is limited to those that are diagnosed and I tell them to focus on what they can still do and let go of what you can no longer do. It is the truth and important to any emotional stability but it is a major challenge a lot of the time in reality.
You can't help but to think about how hard things are that used to be easy, at least that is what happens with me. You can't believe that it could take you 10 times as long to do something as it would of a few short years ago. I still do well compared to many that suffer with this disease but in some ways that is even worse, it gives me a LOT of time to see and think about how I am quietly fading away. Eventually I will be just like my father was before he passed from the disease and not know the names of anyone, people I love will look like strangers to me or at least I won't know what the connection is and that is so hard to think about. I am making myself incredibly sad even writing these thoughts out but I think it is important for anyone that reads it to understand what this disease really does. It is among the most cruel of all fates because it drags out and robs you of all dignity and everything you once were while not even leaving you the happy memories. It is like fading to black, eventually it is all just white noise that doesn't make sense.
Often I have thought the selfish thought that it would much easier to die of most other diseases but I do not get to make that choice. It would be much easier to suddenly go from any cause, if I did not have an ethical, moral objection to the idea of suicide it might even be something I would consider for the future but I will not abandon what I have always believed in just because I was dealt this hand. I always thought it was a permanent solution for a temporary situation, well in this case it is a permanent situation but I still think it is the person's way out who is not strong enough to take whatever life hands you. I prefer to think that for some reason I have to suffer this ending, I just hope somehow, someway I can make a difference before I totally lose myself. That is my true desire. I hope through advocating for more research I can prevent someone from going through the same thing one day, that would be the ultimate thing for me.
PLEASE NOTE: It has come to my attention that in my free flow of writing the paragraph directly above that I insinuated that I have contemplated suicide or would seriously consider doing that while nothing is further from the truth or what I intended to say. While I think anyone being totally honest that has ever faced something extremely difficult has had the thought bounce around in your head but that is something completely different than even considering, contemplating, or thinking it is a viable alternative. I do NOT mean to ever suggest that I think that is an option that should even be given serious consideration, that is my opinion and I know some disagree with me but as I have said it is somewhat selfish in that the mere consequences of making that choice can have deep lasting effects on those that care about you that you leave behind. It also goes against my belief that no matter what life hands you that you must deal with life on life's terms. I am truly sorry in creating any confusion on this point. I suppose I used the word "suicide" to try to demonstrate how desperate the situation can seem at times, not as an actual method to solve the problem.
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