My Journal~Running Scared~

I wish that I had had my computer while mom and I were living with the horrors of Alzheimer's on a daily basis. It would have been such a blessing, and I could have shared my thoughts and feelings with all of you. I do so admire all those out there who have created Alzheimer's journals to share with us on the web.

Instead, I have decided to do something a bit different, and that is to begin a journal "after the fact." When I was little I loved to keep a diary but of course, back then it had to be hidden under lock and key! My journal will basically be my journey through life after the loss of my mom. Alzheimer's affects one's life long after the person has left this earth, and I am certain that it will affect my life for many years to come.

When you come to visit this part of my site you will find me sharing with you both things which are currently taking place in my life as well as moments which have long passed. Every now and then something comes into my mind that I feel I must share with others who may be going through the same things that I once did.

And so my journal and my journey begins....

10-03-03

You might be asking yourself just "why" did I choose to name my journal "Running Scared"? I decided on that name because that is exactly what marysdaughterellen is doing. I am running and I am very scared. I feel as though I am running out of time and very afraid of what the future holds for me.

Right now I am in the midst of a move that I do not want to make but am forced to make because I do not have the money to repair the house I once shared with mom. The dreaded move is expected to be around October 18th and the closer it gets the more panic stricken I become. The more I pack the more memories are awakened, and I feel as though I will die from the grief.

I know it is not healthy to hold onto the past but I cannot help myself. I have had to say "goodbye" to so much in this past year and I just cannot bear to say "goodbye" again.

Yesterday I went outside to look at the condition of my roof and watched as the winds continued to destroy what once was the home I shared with my mother. The tarps are tearing off my roof now, and I stood there frozen to the ground watching in shock and despair as more of my roof peeled off and blew away... I just wanted to scream and look up into the heavens and shout, "Enough is enough!" "You have taken it all from me...my job...my precious mother...and even my house!" Mom would always tell me never to fly in the face of God and she never ever did. I could not help myself, however. The pain inside was just too great, and I needed an answer as to Why this all was taking place.

Some days are worse than others and yesterday was one of them. When I checked our mail I was shocked to find a Soap Opera magazine in the mail box from April 1999. It was supposed to have been delivered to my mother over four years ago. I held onto it for dear life as though it was still a part of her that I did not want to lose. That magazine brought back so many memories which flooded my heart..

Mom was always fond of watching her "soaps." Before I came to realize that there was something terribly wrong with her, she suddenly seemed to lose interest in watching them. She was unable to understand what was going on and just stopped watching them. This led to her getting "hooked" on various channels, and she would spend weeks watching the same shows over and over again. For instance, with the Game Channel they repeat the old episodes over and over. It would drive me crazy because mom would want me to come downstairs and watch them with her. I could not understand how she could stand to watch the same shows over and over again. Of course, at the time I had no idea that every show was new to her because she had no memory of having ever seen it before.

Mom also lost interest in reading her "soap opera" magazines. I'd bring them home for her to read and she would leave them sitting there untouched. I had no idea that she could no longer comprehend what she was reading and that she was not even able to read very much any more. I feel so badly because I did not know and she was not able to tell me what was happenning to her.

She was no longer able to work her tv remote control and as hard as I would try to explain to her how to work it, the more frustrated we both became. The same thing took place with her digital microwave. She did not tell me for quite some time that she could not operate it any more because she did not understand what the numbers meant. She was cooking her food only half way through and I found her eating a half frozen meal one day. I went out and got her a microwave with just a dial on it and that seemed to work better for her but she still would get confused and eventually I just made her stop cooking.

With mom her inability to do things just seemed to come on so suddenly. Now I wonder if they actually came on slowly and I just chose to not see what was going on...

I remember shortly before her death while visiting her she pleaded with me to show her the front page of the newspaper that I had with me. She said,"Please...wanna see if I still can read." However, she was unable to get any further than just the headlines. She could not make any sense out of anything else on the page, and she looked up at me and she cried. My God! What an unrelentless, unmerciful monster Alzheimer's is!!

Recently while visiting the nursing home one of the nurses told me that her mother-in-law who had Alzheimer's would be able to tell you what time it was by looking at the clock, but if you asked her to take a clock and place the hands where that time would be on the clock, she would be unable to do so. She explained that this is quite normal. It never ceases to amaze me as I learn more and more about Alzheimer's even after mom's death.

I feel so badly that it was not until after mom's death that I learned that so many Alzheimer's victims do not like loud music or to be around crowds of people. I can remember during the holidays last year when I insisted we go and listen to an entertainer who always drew a large crowd at the home. I thought mom would enjoy it but I could not have been more wrong. The moment the room began to fill with people she became agitated and wanted to leave. The music was too loud, the people were too loud, and all she wanted to do was escape. If I would have understood that she was afraid I never would have become upset with her.

When I would visit her towards the end of her life we would sit in the hall and talk. We always drew a large crowd around us because I would talk to everyone. Mom would soon start to shout for everyone to leave and I thought she was just jealous. I never knew that all the people and the laughter terrified her. I can still hear her saying in her loudest voice, "Attention...attention ladies and gentlemen! It is now time for all of you to go to bed now."

There is so much that I wish I had known about while mom was still alive! Perhaps I would have been able to better understand so much more of what she was going through. That is why mom's site here on the web is so important to me. Perhaps my talking about things that we experienced and my sharing with you new things that I have learned since her death will be able to help some of you.

From my mistakes you may learn that what you think is pure "stubborness" on their part is really "fear." Making my mother afraid will haunt me for the rest of my life. Since I did not realize that she was afraid, my getting upset with her only made things worse. She then most likely became afraid of me during those episodes. Oh please forgive me, mom! I had no idea just how afraid you were and I never meant to make your terror and fear worse....

For the past few months I have had a terrible time with my short-term memory. I find it extremely difficult to remember things I have just done, what I have just said, etc. Of course, it could just be that I am soo totally exhausted and stressed out from all that has taken place. However, I have to wonder if it is a sign that I, too, am on the path to experiencing the horrors of Alzheimer's.

It is becoming more difficult with each passing day for me to have a complete conversation with someone. I will usually get right in the middle of telling someone something

From my mistakes you may learn that what you think is pure "stubborness" on their part is really "fear." Making my mother afraid will haunt me for the rest of my life. Since I did not realize that she was afraid, my getting upset with her only made things worse. She then most likely became afraid of me during those episodes. Oh please forgive me, mom! I had no idea just how afraid you were and I never meant to make your terror and fear worse....

For the past few months I have had a terrible time with my short-term memory. I find it extremely difficult to remember things I have just done, what I have just said, etc. Of course, it could just be that I am soo totally exhausted and stressed out from all that has taken place. However, I have to wonder if it is a sign that I, too, am on the path to experiencing the horrors of Alzheimer's.

It is becoming more difficult with each passing day for me to have a complete conversation with someone. I will usually get right in the middle of telling someone something alive and to continue to spread the word about this terrible monster. I know there will be other wonderful sites to take its' place, but in my heart and soul I would like to believe that my labor of love to mom and those like her will continue on forever.

When I leave this earth I will not be leaving behind any riches or any children. There will be no family left to carry on my name. What I would like to leave behind is this small "legacy" and "tribute" for all those "brave" souls who have been destroyed by this terrible beast. I would like to be remembered as someone who truly cared about each and every one of them and who has tried my best to help in some small way.

This month it will be eight months since mom left me. I find that so hard to believe since it seems like only yesterday. I am not looking forward to the upcoming holiday season but I shall spend some of it at the nursing home with those still left behind.

Mom lives here with me in a small brass box with praying hands on the front of it. It is so hard to believe that this wonderful, vibrant woman lives within such a tiny box.

The box is covered with lip prints. Each morning and every night before I go to bed I kiss her and tell her just how much I miss and love her. I can hear her saying as she would often say at the nursing home,"Enough..enough kissing!" No mommy, there will never ever be enough kissing....

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