March 2015 My favorite excerpts from my friend Harry Urban’s blog at

http://mythoughtsondementia.com/blog.html

Harry Urban; March 9, 2015 ·

I’ve had enough “me” time, now I need to get back to doing the things I love. The things I love are quite different then those you may love. I feel like I am coming out of hibernation and want to roar. I am strong enough to take on my critics and fight for equality for those living with dementia.

I’ve taken a beating the last several months and you have no idea the things I lost. No longer, I licked my wounds and now I’m ready to get back into the fight. I will not back down when you tell me all the advances we made, I will tell you what still needs to be done and how we can get it done.

I will question you when you ask me to donate to dementia research. I want to know what type of research and what results you found so far. I also want to know who is lining their pockets with the money I donate. I think that we have the right to know where the millions of dollars that we donate goes and what it is used for.

I want the truth about living with dementia to come out. I want the leaders of dementia awareness to be the ones living the disease not the person that cared for one person. Every person living with dementia is different from the next and can not be grouped into one. I want a lot and unless I reach for it, I will never get it.

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Harry Urban; March 13, 2015 ·

It’s a long way from where I am going and the hardships are many. I need to keep going because the darkness is right behind me. Every step I take is getting me closer to the light I am searching for. The winds in my sails are beginning to go out and I’m starting to drift into the fog.

These are my thoughts on a cloudy day. I have been called an overachiever and that will not stop me from reaching for the stars. The people closet to me do not understand what drives me and where I am heading. They do not see the future I see and are content with what surrounds them. They want to stay safe in their world and not venture into mine.

I am not afraid of that soft chair awaiting me because so many are working hard beside me and following the part of my dream that is theirs. They have their own problems along with the passion to help all living with dementia. We are writing history and our stories will be told many times in the future.

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Harry Urban; March 15, 2015 ·

Living with dementia, in my case Alzheimer’s, is so much more then memory problems. I am in the stage where I am having visual perception problems. I may be looking straight at an object, but I` cannot identify it. For example, with money, I may have difficulty telling one coin from another.

I may ‘lose’ something and look all over for it and Hazel finds it, sitting right in front of me. I didn’t lose it, I am not able to recognize it. I try to laugh it off by saying something like, I really need to get my glasses changed knowing that my glasses are not the problem.

This is one of the many changes that is occuring with me and I realize I’m changing but can not do anything about it. This is what scares me about my disease, the day will come when I no longer recognize you.

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Harry Urban; March 17, 2015 ·

Many people with Alzheimer’s disease talk about “triggers”—something that causes agitation, increased stress or more difficulty thinking. Understanding triggers and how to react to them is important in reducing how often they happen and the impact they have on you.

It is hurtful when someone judges us or provides us with comments that degrade our self-worth. This sets off so many emotional triggers that eventually leads to agitation. People test, quiz, or push us for answers. They may think that this is helpful in making us think, but it is not.

Some simple things to avoid getting us agitated is:

Remind me who you are; don’t keep me guessing. Don’t quiz me or test me unnecessarily. If you do ask a question, give me time to think and respond. When talking with me, give me as much information as possible in the conversation. I will let you know if I don’t know something or can’t remember something.

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Harry Urban; March 20, 2015 at 8:11am ·

Do you have any goals in life or do you just want to get through the day? Are you satisfied with your life and would you be happy if tomorrow is just like today? My life is pretty predictable, I will wake up in a fog and have the hopelessness of Alzheimer’s tagging along with me.

I don’t like my life because it could be so much better. Every day I dream about a world without dementia and it is not a wish but a vision of times to come. Am I a dreamer or a visionary? It doesn’t matter what you call me because it is my destiny and nothing will change my vision.

I don’t want to sit on the fence and watch someone else make my life better, I want to be part of the fight. I want to reach the masses telling my stories knowing that there are many just like me that will continue fighting after I am gone.

We are not looking for that world without dementia, we are creating it. We are becoming United Against Dementia and building that world together. Help us or watch us, we will succeed. matter what you call me because it is my destiny and nothing will change my vision.

matter what you call me because it is my destiny and nothing will change my vision.

I don’t want to sit on the fence and watch someone else make my life better, I want to be part of the fight. I want to reach the masses telling my stories knowing that there are many just like me that will continue fighting after I am gone.

We are not looking for that world without dementia, we are creating it. We are becoming United Against Dementia and building that world together. Help us or watch us, we will succeed.

March 22, 2015

Keeping it locked inside of us. That is what we do when we live with Alzheimer’s. We show you only what we think you can handle and the rest is locked inside. The untold stories of dementia may never be told because you do not want to hear them or you can’t handle them or maybe we are to afraid to validate our fears.

You may daily see the symptoms of dementia but rarely will you see the disease the way we do. How do you explain the hopelessness we feel and not make you uncomforable. Just like the underground tunnels in New York City, we have our own world that we live in. You hear stories about them, but would never walk through them.

They are my home and I try to tell you bits and pieces about my life until the pressure falls on me to keep my stories positive and rosy. There are the few that want to know and they are the ones that will be making the changes for a better life.

I don’t want to be the writer of doom and gloom but I also don’t want to mispresent the ugliness of dementia. Don’t think that living with dementia is all bad because I have so many wonderful days, but the flip side also says that all days are not wonderful and those are the days I go quite and lock it inside me.

  Harry Urban March 23, 2015 at 8:11am