ALL of them are excellent, but these are my favorite excerpts from Harry Urban’s blog during last half of July 2015 (Part B). I personally consider the entries on this page exceptional – even for Harry !!
Harry is one of my primary mentors, and the prime reason I take the time and energy to write my own blog, and the many hours I spend to share the writing of others.
The Dementia StoryTellers of the World
It is unlikely that you would enjoy sitting with me and listening to my story if I told you about the dark side of dementia. That part of the story needs to be told but we are judged because it is so hard for someone that is not living this disease to believe it.
Sometimes we slip and act out the dark side and explain it as having a bad day. The reaction we get makes us quickly close that chapter and try to move on to something else more pleasant. Understanding the dark side of dementia may be best left to after we are gone because it would be hard to look into your eyes and realize you know what we know.
So many have a need to know what it is like walking on the dark side of dementia so they can better understand their loved ones. It is hard to give you a accurate answer because everyone is different and no on talks about it. I can tell you what it is like for me with the understanding that your loved one may react different.
For me I am walking with total hopelessness with the urge to give in to my disease. A rage overcomes me and the littlest thing can cause an outburst. There is nothing you can do to help me because I am so deep into the void that I can’t and don’t want to listen to you. I know I have to fight to get out which means I may lash out at you.
I am loosing the will to fight and just want it to end. I am not thinking about taking my life but rather making the emotional pain go away. This is when there is no denial that I realize what my disease has done to me. The feelings of hopelessness and loneliness overcome me because how could anyone love a person like what I became.
This is only a portion of what it is like to walk in the shadows of dementia and I tell you this not as doom and gloom but so you can understand the good, the bad and the ugly of dementia.
Advocating is a struggle to make believers out of nonbelievers and mentally it gets just to tiring to do after a time. You begin to wonder if the effort is worth it and slowly your voice becomes silent.
When you started to advocate, you knew that you could make changes but slowly you realize you are telling the same stories to another group that doesn’t believe you and once again you start the cycle of awareness. Alzheimer’s robs you of the hope of a better quality of life and your only feelings are that you made it through another day,
No I’m not having a bad day, just telling what it like living with dementia.
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Excerpt July 18: I just want to grab a hunk of wood and start sanding. Have you ever taken a branch from a Birch tree and sanded it. It gives off a smell that if you closed your eyes you will have the memory of drinking birch beer soda. It is the most heavenly of smells. The same goes with so many other types of wood and the fragrance they give off. That is the reason I fell in love with woodworking, it brings back so many wonderful memories. You can do so many different things to rekindle memories of long ago, you just need the desire to do them.
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