February 2015 My favorite excerpts from my friend Harry Urban’s blog at
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Harry Urban February 1, 2015 at 7:14am
I want to go home, where I belong. I seem to be drifting away into this world of nothingness. I don’t belong here and can’t understand why I am here. These are …the thoughts that go through your mind when you suffer from some form of dementia.
You seem to suddenly realize that your life is being forgotten. You look around and don’t recognize anybody or where you are. It doesn’t seem right and you just want to go home. The problem is, I don’t remember where home is.
I may be at the point of no return. I can’t retrace my steps to that other life I once lived and I certainly can’t hide. I scream, I want to go home, but no one can reach into my mind to help me. I am alone and wandering down this road that I believe is going to lead me to a better life.
Harry Urban February 9, 2015 at 6:14am: Have you ever had the feeling that you helped someone you never met? There is nothing like it. I wish it would be a mandatory feeling that everyone had to feel at least once in their life. To me it is a very emotional feeling that is hard to explain. I never cry but I shed tears when I am able to help someone that has no one else to turn to. I call it my work but it is a gift given to me by this horrible disease I have called Alzheimer’s. Alzheimer’s has taken me to the darkest of places and I had to learn how to crawl out or be stuck there for as long as I live. It is not a social commitment or a part time endiver, it is what I am suppose to do with my life. I take it very serious and get upset when someone considers it nothing more then a place to talk. Unless you walk the path, you have no idea.
Harry Urban on February 11, 2015 at 6:58am We are going to see some of the coldest days we had this winter in the next several days. This coldness will not come close to how some treat people living with dementia. They want to remember us the way we used to be, but the fact of the matter is, they are to callous to witness what our diseaser has done to us.
They don’t care about us and only want to protect themselves. I will be visiting people that were dumped off at a nursing vacility and forgotten. I am told by many t…hat this never happens and I invite them to come along with me and see first hand the hardships we live.
February 12, 2015 at 11:46am: “OK Hazel, I turned 15 crochet hooks, three nostepinne and a yarn bowl NOW can I have a lap blanket?”
To all the “chatty Kathie’s” out there, when you chat with someone with dementia, please slow down. We can not share your excitement with you if we are unable to process what you are saying. Many a good conversation flew by because we could never catch up to what you are saying.
The problem is not you but in the fact that our brain runs at a different speed then yours does. Look at us so we can read your lips. Our hearing may not be up to snuff, but for some reason I understand what your are saying if you are looking at me.
Stop with the hand motions because you would not believe how that distracts us from what you are saying. Communicating with someone with dementia is so different than being in a sewing circle. We need time to process what you are saying and take a breath between sentences. We not only need to hear what you are saying, but sometimes “see” what you are saying. I will be distracted with any hand motions and lose my train of thoughts because I will be trying to follow your hand motions. Other then that, we are easy to talk to, try it sometime.
February 15 at 6:10am regarding comment “Alzheimer’s is similar to a non-stop panic attack where suddenly nothing has any relevance”:I think Julianne Moore’s comment describes my life perfectly. Some day’s I have uncontrollable fear attacks where I am not only afraid of my future but what my disease is doing to the people I love. I phsyically break down in tears shakeing because I know there is nothing I can do.Then there are the times I have anger attacks. These are more intense then just getting mad. Once I lost control of my anger and it scared me beyond belief. I had no control of my emotions and Alzheimer’s was telling me what to do.
I have learn ways to avoid these attacks by avoiding the people that anger me and try to avoid stressful situations. I do things now that I never did before, I walk away. By walking away from a stressful situation I am not taking the cowards way out, I am trying to protect the person that is argueing with someone with dementia.
I am guilty of hiding the true face of my Azheimer’s and everyone is shocked when they see it on my face and hear it talk through my mouth. The belief is that Harry looks and acts so good, he possible cannot have dementia. Reality surfaced today and I was unable to hide from you what Alzheimer’s is doing to me behind closed doors.
There is always mixed emotions when a strong leader, raising dementia awareness, stumbles and shows the ugly side of dementia. Very few people get …a glimps of what Alzheimer’s is doing to me and only see the showman explaining the effects of dementia but leaving out the horrors that he is living.
I am afraid to tell my true story because you got a sample what dementia does to someone. One minute I can be hateful and only want to hurt people like the way I hurt. These are the days I lock myself away like a caged animal until it passes. Obviously I must have lost the keys because I lost all common sense and told how I was feeling. I left down my guard and spoke to the people I love about how I was feeling and got mixed reactions. I feel so bad and sorry that you saw what it looks like when I fall into that dark hole I so often speak about
And don’t be afraid of the dark
At the end of the storm, there’s a golden sky
And the sweet, silver song of a lark
…
These are the lyrics to a song, You Will Never Walk Alone, that I first heard in the 60’s and throughtout my life, I never forgot them. Several threads are keeping me earth bond and the thought that I am not walking alone is one of them.
What if you do not have this thread in your life and you feel that you are walking alone. I know and talk to so many that feel they are alone walking through their storm. I sometimes walk alone and in my opinion, it is worst then death.
It is easy to give the thread of Hope by reaching out and spending time with someone lost in their thoughts. Walk with them, help hold their head up high and help them not be afraid of the dark.
then 3:35pm:
I don’t know what the future holds but I know who holds my future. After meeting with St. Anne’s Retirement Community management and several case workers, I am standing taller then a Georgia pine. Hope you don’t mine Robert.
I presented my United Against Dementia program and they opened their arms and are willing to partner with us. They now need to talk amongst their fellow management and get back to me when we can start.
They gave Hazel and I a tour of their facility and I …walked away so happy with what they are trying to accomplish. I saw many activities with the residents but what impressed me the most was the smiles I saw. They have around 150 residents and my ideas will fit in nicely with what they are doing. I need to get final approval but I would like to partner and follow what a group is doing in California and call our volunteers Guardian Angels.
I was awaken by a voice that told me, “you got to try a little harder”. I heard your message loud and clear and will do my best to follow it.
February 21, 2015
We need to educate about the world of dementia. Experts and the very smart try, the medical field tries but they only know what they were taught and perceive. Unless you live this life, you will only know what you read and what you think is happening. The teachers of dementia must be the people living this disease.
We are capable and willing to Stand Up and Speak Up but you must be willing to sit down and listen. We will tell you about the horrors we see but you must not get angry at us because we see what we see and do the things that make sense to us.
There are a few that are willing to understand that our world is so different then yours. You don’t want to believe it is as bad as what we say but in our mind, we are not lying. We are saying what we believe at the moment.
The first step needed to understand my world, is to open your heart and not think so much. When you start to think you compare us to your standards and miss what we are saying. Don’t be mad because we are different, love us because we are the same.
February 23, 2015
The Tears of Dementia will be published after my death. It is a book that travels along the path that no one ever sees because we hide it and only someone living with dementia is strong enough to walk it. There is a dark side of dementia where we live that we dare not speak about.
After my death is the only time I can share my nightmares, my constant thoughts of death and what this disease did to me. You will see the side of me that I fight to hide. That is the only time I will be able to share my weaknesses.
Don’t misunderstand, I am surrounded with love and support but there is a part of my life that the needs are just not being met. Someone will say, tell us so we can help you. Then the pity, judgment and feeling sorry for me begins. The unspoken cruelties of dementia.
We don’t want these, we want dignity and the chance to live a happy life.
February 25, 2015
I’m losing you. Bits and pieces are slowing falling into that void that is slowly becoming my life. I’m trying to hang on because you mean the world to me but I will never win this battle. The horrible, cruel thing about dementia, in my case Alzheimer’s, is that it leaves that little part that haunts me and lets me know that I’m losing you.
I can’t get those memories back because I did not lose them, they were taken from me. It is a permanent lose and one I will never find again. It begins by our life together fading away evan though we are married almost 49 years. The vacations and the good times are still in my heart but not my brain.
I remember the day we ran away and eloped but not the day our kids were born. I know we had a happy life together because I can see the love that is still in your eyes. It hurts so much when I see you trying to hide the frustrations and pain that this disease is causing us.
I wish I had the answers but I don’t, I only hear you telling me, “we will always share our life together, whatever life brings”. I don’t need to be reminded of this love, it is my very soul.
… and then …
She’s suffering and all I can do is hold her hand. Those words brings tears and I crumble to my knees whenever I hear them. We are helpless and we know it. Dementia will do that to us. There are no words to ease the pain you are feeling. Your loved one may be walking on the portion of the path that you cannot follow.
They are not alone though, no matter what your beliefs are, she is surrounded with the love and comfort only she can feel. We are left behind while she is entering into a world we will never understand until we take that final walk.
She may no longer need the love and support we offer but we sure do. Someone must tell us, we are loved and not alone, and walk with us back into our own reality.
February 27, 2015
For the last half hour I watched a squirrel stealing food out of my bird feeders. I should be angry and chased him away, but I didn’t. Interesting that other birds join him and ate in harmony. Most people would have not given them a second look because of their busy life. They are missing out on the glories of nature and ways to take away the stress we are under.
Alzheimer’s made me open my eyes to the world around me and appreciate the things I took for granted. How many people watched a ant carrying a load twice his size or bees fly between flowers getting the necture inside? The changing and movement of clouds fascinate me and I can get lost in my thoughts.
Some may tell me to get a life but I found inner peace, have you?
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