PWD Harry Urban March 2015

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.

,

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

Simply having a diagnosis of dementia doesn’t mean that people can’t cross the road safely. Over protecting us might make you feel better, but it it is smothering us. I feel so caged in at times while you are keeping me safe. There is a difference from keeping me safe from danger and keeping me safe from your fears.

I want to feel the buzz of being free. I know the time will come when I need to be locked in but for now, let me be a free man. Let me fail and don’t prevent me from trying. I believe all care partners have the need to overprotect us. When we do something we wear the smile of a baby taking it’s first steps or the day we rode our two wheeler bike without training wheels. I want to have those feelings.

I’m out in my workshop and I make something and you ask, what is it, and I say “I don’t know but ain’t it pretty”. The end result doesn’t matter to me, it is getting there that makes me happy. When Jade and I take a walk and I end up back at my house, I feel like another mountain was climbed. I need to overcome my fears and my care partner does also. Keep us safe but let us be free for as long as our disease allows us.

March 24, 2015

Why am I always lost in my nightmares? There is a message there but I can not understand it. The last several nights I dreamt that I was lost somewhere that I never have been before in my life. The frustrations of not being able to find my way is almost unbearable because I have no idea where I am going.

It’s at the point where I don’t want to go to sleep because I’m afraid of getting lost again. My disease not only affects me when I’m awake but also during my sleep. I live with Alzheimer’s every single day of my life. Maybe the day will come when I forget I have Alzheimer’s and my life will become blissful again.

Why can’t I dream I’m tip toeing through the tulips or some other crazy thing like that, but my dreams hit very close to home. I say, ‘I’m lost in a fog of Alzheimer’s’ and it is so true. Each day I realize I can not remember parts of my life and no matter what I do, I can not bring them back. I guess, sad to say, I do understand my dreams.

March 25, 2015

The Tears of Dementia is going to be a collection of my thoughts that I was never allowed to speak about but want to be known. We are expected to be positive but the reality of our disease will not allow it. We are told not stay in the dark side but never told how to. It is my belief that the darkness will overcome everyone of us before we breath our last breath.

Looks like we made it, now we need to say goodbye. I can remember the day I was diagnosed with dementia so many years ago like it happened yesterday. We had no idea how many tears were going to be shed nor the hardships we would face, but we had each other and vowed to make it to the end, together.

The early stage wasn’t so bad because I was able to do most things and I was naive about my disease. I remember clearly being able to drive to a ballgame and felt pretty good about myself. I knew what my future was going to bring and was determined to see changes made. I was brave enough to take on Alzheimer’s and open my life so others could see for themselves, what it is like living with dementia.

Everything was clear to me except for the obstacles that were put before me. I was introduce to the critics and stigmas that go with voicing your observations about living with dementia and that is when I learn how to cry. I started my lessons on the actuality of Alzheimer’s and began to understand the things I was once able to do but my disease was slowly taking away from me and I would no longer enjoy doing them. I could no longer go for a hot dog at the ballgame and find my way back to my seat.

I could not walk up to the barber shop without getting lost. The things I always took for granted, I could no longer do. I entered the mid stages still wearing my rose colored glasses and thinking I still had the upper hand. It took me this long to be introduced to the fears of my disease. I could no longer deny what dementia was doing to me.

I still had my passion for dementia awareness but was paying the price for ‘bucking the system’. I only viewed my disease through my eyes but everyone wanted me to see it through theirs. They wanted my voice to speak out what they wanted to hear. This is when the actuality became the harshest because they knew my weaknesses and were able to control me in order to handle me and get what they wanted.

I turned to my faith and prayed for inner peace, I just wanted it to be over. We had some very long talks and I slowly realized that I had a purpose in life and was given several gifts to help me understand my goal. My bitterness was removed and the warmth of understanding was given to me. My critics no longer were able to hurt me and some of the tears were drying up. I finally realized the my disease was not about me but how it effects so many others. I was given the inner peace I desperately wanted.

I continued through the mid stages enjoying many successes and several failures. I was losing my battle and my passion for bringing dementia awareness. The weight was becoming unbearable and I realized that the late stages were ahead of me. You can tell me I am wrong, but I see what I see.

I am not ready to give up yet but no longer have the desire to argue with people about my life. It is time to say goodbye to them and like my memories, they will be forgotten but not forgiven.

March 27, 2015

I believe the only way to slow down the progression of dementia is to out run it. Exercise your body and your mind everyday and keep active in your life. Refuse to let it slow you down and keep pushing yourself to do more.

Learn to live in the moment and remove the tension, fears and frustrations that surround you. Watch your diet and keep your body healthy. Sounds simple but most people do not do it. They rely on medication to cure their problems when a simple walk around the block could raise their spirits and wash away the frustrations.

Taking a walk in the rain may get you wet but so many memories come flooding back to me and puts a smile on my face. I do my ‘thinking’ when I am outdoors. I live in the moment and I’m totally safe. I still take medication to regulate my body but I found other ways to make me happy.

 

Above are excerpts from Harry’s blog at
http://mythoughtsondementia.com/blog.html

* Admin issues: SHARE dementia awareness thru buttons below. If interested in receiving notice of future blog postings there is a “follow” button in the upper left corner (MS Explorer) or lower right (Safari and Chrome). Feel free to leave your thoughts in the form of comments, but please filter your comments with truthful loving kindness to all concerned. If there is an advertisement below, I have no control over what is shown. — Copyright by Harry Urban on 2015-03/20
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