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.
Below are five excerpts from Harry’s blog during November 2014.
These are on subject of Relationships
November 3, 2014 * ((in page for “advocacy” and “relationships”))
My friend Norm Mac wrote about his “rage within” and I think this is a story all of us living with dementia would like to tell. My rage within becomes uncontrollable at time and the emotional pain becomes so overwhelming to me. Not much upsets me unless it has to do with my passion of dementia awareness …
I have lost so much of my life, both physically and emotionally, due to Alzheimer’s, that I feel like I am racing toward that black void that is awaiting me. The thing that is holding me together is my work in raising dementia awareness. It is more then a job to me, it is what is keeping me alive. I believe I was given this passion for a few more years of mental consciousness. …
I am no longer the person you can confront or agree to disagree with. You must pick your method of disagreeing with me very carefully. This does not make my way of thinking right or wrong, it just means I no longer have control over it and there is danger of me going into … uncontrollable rage.
Tags: anger, rage, time, advocacy, relat, commun, disagree, control
November 4, 2014
Time is my enemy as I walk this lonely road of Alzheimer’s. I realize that as time goes by, I am getting closer to my end. I don’t fear the end, only what lies in between. Every now and then, I experience a little of what lies ahead and it terrifies me, not for me but what it will do to the people I love. Will they be strong enough to endure watching me go into that black void that I know I can’t escape from?
There comes a time in this journey when you need to smile and say goodbye to me. You must know that you gave me all the love and comfort I needed,
but I must now walk alone.
This is what terrifies me, will you be able to let go and let me continue my journey, alone.
You have done everything possible but you cannot follow me.
Rejoice in the memories we made and smile when you realize, I never left you. I believe we will be united for eternally and you will be able to lean on me whenever I am needed. When you get sad, open your heart and grab my hand, I will always be there to help you.
Tags: relat, commun, time, fear, care,
November 13, 2014
I write a blog at mythoughtsondementia.com concerning my daily thoughts on living with dementia. If you look, there are days missing from my blog and people wonder if I deleted those days. The answer is no, even though I try to write about the good, the bad and the ugly with being diagnosed with Alzheimer’s, there are times I simply cannot concentrate to write anything.
You always know when I am having a rough time with my Alzheimer’s and it is too hard to write about it. I am not ready to share those fears and feelings. I believe there are things no one wants to talk about because the pain is too great. Not physical pain but the emotional pain that goes with our disease.
We want to be in control but there are days when our frustrations overwhelm us and we go into a void that you cannot reach us. It is like we go into a shell and lose all means of communication with the outside world. It is our safe place where we cannot be hurt, we shut out everything around us and hide.
It becomes so lonely that we want to scream for help but no one hears. At times someone reaches us but we fight them because we do not want to leave our safe place. Dementia is a lonely frightening disease because we are unable to tell you what frightens us. When you see my missing days in my blog, you know I am fighting my demons.
Tags: blog, frustration, symptms, commun, safety, relat
DRT: Safe Place (note 2014-11/07: “I avoid the things I can not do and hide when my disease grabs hold of me. I go into my safe place and escape reality.”)
November 16, 2014
… You can rant and rave but believe me, they will not change.
What will happen is the person living with dementia will pick up on your frustrations and anger and mimic you. Now you created a problem because the seed … has been planted and I will reacted toward that. The more angry you get the more angry I become even though I have no idea why I’m angry.
… Rule number 1 is, you have to take care of yourself before you can care for me. …
Learning what this disease does is half the battle in controlling it. Find out what makes you angry and avoid that so I don’t imitate you and cause more grief.
Tags: emot, anger, care, contagious emot, symptms, relat
November 21, 2014
Don’t rain on my parade or give me some reason not to enjoy my life.
I will not own every disagreement that occurs in my family.
Most disagreements I do not understand or care about to get excited over them and let then disrupt my day. I need to stay focus on positive thoughts in order to keep my inner peace.
I get irritated by gossip because you are stealing my happiness from me.
I am selfish, I want to stay healthy so I can stay alive.
It seems everyone wants to tell me the bad things that are happening because it is news and important to them.
There are things I just don’t need to know.
Most problems I hear are out of my control and only intensifies my emotions.
There is a fine line in lying to me and withholding information that I have no control over and only upsets me.
… it is best to keep the gossip from me and let me enjoy the spirit of Christmas. Let someone else get excited, I only want to Ho Ho Ho.
Tags: relat, commun, news, disagree
* * *
(( Worth repeating about Communication with SELF ))
September 13, 2015
I’m going to sit right down and write myself a letter. In this letter I will write why I want to continue fighting my Alzheimer’s and what I need to do to stay out of the shadows of dementia. I will list the things that I refuse to let Alzheimer’s steal from me and what is keeping me alive. I will tell about the joys I have in life and remind myself that there is life after my diagnosis.
My letter will be kept where I can read it everyday and remind myself never to give up. — Harry Urban — 2015-09/13
Harry also has a group of both text and virtual support groups through “Forget Me Not”. Website is at http://www.forgetmenot.support/
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