Dear Alzheimer’s Disease:

Dear Alzheimer’s Disease:

My mother was diagnosed with you a little over 3 years ago. We think. She didn’t actually tell us for a while. See, she wanted us to treat her the same and see her as she always had been. I had noticed a few weird occurrences, but chalked it up to stress. She had had what the doctors thought was MS, but perhaps was not at all.

She actually had early onset alzheimer’s and was only 56 when she was diagnosed. Can you imagine? Loosing yourself at such a young age?

My first thought was, selfishly, what will I do without my mom? If I have to face cancer again I can’t do it without my mom. She was there for me through every surgery, every treatment, every big appointment. My first thought was to my safety and well being.

You took her independence. She had a very high functioning job. One that she did very well and loved. One that helped her to thrive and help others who needed it. You took that from her very early into the disease. She simply couldn’t keep up with the meetings, the emails, the needs of all of her employees, students, parents, administrators. She had to take early retirement and at her retirement party she was devastated.

You took her peace of mind. From the day she told us I noticed her researching. She researched constantly, how to slow the mental decline, what doctors to see, what actually helped and what didn’t… She was constantly on her BlackBerry or her laptop, looking up articles, journals, forums, etc. She read books and she told us to read books. She sent us to alzheimer’s facilities to “see how bad they were”. She told us how she didn’t want to end up in a nursing home “with people having to clean her”. As you progressed her anxiety about that grew stronger until it was the thing she thought about the most.

You took time with her family. She became anxious in groups, to the point that she didn’t want us kids to visit. The noise and activity, especially with the grandkids around, was too much. She would have seizures the doctors thought were brought on by stress and end up in the hospital almost every time one of us was to come up for a while. She couldn’t leave the house sometimes and my dad had to go to functions and family dinners, etc alone. Several vacations she wanted to take were cancelled because the simple thought of an airport or hotel or crowds would put her into a panic. She wanted a few last fun times with her family and she couldn’t have them.

You took her memories. She made a video for us all – about 6 months ago – telling us a few stories about herself, talking about us as a family, talking to the grandkids. It was during this video that I saw some real decline. When we were around she could hide it. She could change the subject or maybe we just didn’t bring up “memories” – she could say she didn’t feel well and go lay down. Sure, I noticed when she had trouble remembering her address or birthdate at a doctor’s appointment, but I was only around for those things once in a while and most families know that memory is a funny thing – it can be wiped clean from one area but not another. On this video she said several things wrong – things about our childhood, and perhaps even her time with our dad – that were not quite right. The wrong son was mentioned in a story, the wrong event in a time line…. You know what? She cherished those memories, and you just pulled them out of her head like a string out of a sweater. Like they didn’t even matter.

Most importantly, you took her happiness. The last 2 years of her life she was very unhappy most of the time. She had severe depression that nothing seemed to help. She could not get over the imminent ending she felt pressing down on her. You took every good thing from her and made it bad in her head. In her journal she wrote the last week of her life about not trusting her children and husband. About feeling like we didn’t trust her. She wrote about the sadness she had and the anger she felt. She wrote about the desolation and alone-ness.  You took every ounce of happiness she had and you crushed it.

And I hate you for it. I hate you like I have never hated anything or anyone else in my life. I hate you so much I can’t even put it into words. I want to hurt you and to stomp you and to crush you. But guess what? You even take that. You are not a physical being we can rail against or take to the justice system to be tried for torture. You even take the ability to fight you away.

Finally, you took her life. My beautiful mother; my strong, lovely, vibrant, sassy, wonderful mother; she took her own life a little over two weeks ago. It was her second attempt and this time it worked. I knew she would do it, she had warned us all she would not let you take her down all the way. I just wanted a little more time with her. A couple weeks later my son and I were to come visit her. He missed out on that last visit with his grammie because she couldn’t hold on a couple more weeks. You took my son’s grammie – someone who had helped raise him and had been an anchor in his stormy life. You took her from us.

You are cruel. You are heartless. You don’t deserve to exist. I have no words for the pain you inflict and the hurt you cause. I don’t even know how to start to describe it. So I will end with this:

“I have decided to stick with love. Hate is too great a burden to bear.” – Martin Luther King, Jr

I hate you, Alzheimer’s disease. But I can not wallow in this hate too long. I can not let it take my happiness and peace of mind like it took my mothers. I will focus on the love I have for my family and my friends. I will remember my mother as she was before she was tortured by you, and I will remind my son of her.

Love is the answer. Always.

I just need to hold on to that thought.



Breaking Boards

My son has some anger issues.

He has a temper some days and when he gets angry he gets so angry he can’t always control himself. We first started seeing this in preschool. I mean, he got angry before that, and he would throw fits, but he never got so angry he turned red and shook and spit when he talked and screamed and just couldn’t control himself. His first year in preschool was bad. I personally think part of it was the environment in the classroom and part of it was the teacher. Part of it was also having to do what other people wanted, having to do things when the teacher says, sharing, etc.

He has gotten better. This last preschool year he was doing better, and now he seems much more in control. I hope that holds because he is going to kindergarten and they won’t have that shit there.

We work a lot on what to do when you start to feel yourself getting mad, what to do when you feel like you can’t stop getting mad, who to ask for help, how to calm yourself down if you are mad, what things are ok to get mad about, what things to try to let go of, and last but not least – to never ever use your anger physically against another person unless they hurt you first.

Today was an angry day for him. I understand. I have angry days too.

At swimming lessons there are 2 girls and 2 boys. He doesn’t like the other boy, and the other boy hasn’t been there much lately. I think they went out of the country. He was back today and was causing trouble with my son. They both had to be put in time out. I had to go out to the pool area because he was so angry he was in the other boy’s face, yelling, saying mean things. I had to stand there for several minutes to get him to stop saying “you started it! It’s your fault!” at the top of his lungs and at the top of his anger level. To be fair, the other boy does usually start it, but that’s not the point…

Tonight we were talking about being angry. He started thinking about something that happened the other day. He had karate testing and had to break a board. He had done fine in practice, but those boards have a line where you are supposed to kick. He couldn’t break the board for 5 or 6 tries and he got frustrated. He kept saying he was confused. The main teacher finally took the board, put it on 2 bricks, and had him stomp it.

Tonight he brought up that when he broke the board by stomping on it, he had thought about “angry” and then he could concentrate on breaking the board.

I am going to be trying to explore this more.

I believe all of our major traits are a “gift” of some sort. Most of them are double edged swords. (some of mine seem to be sharpest on my side) If I can help him learn to use his anger in a productive manner; if I can help him learn that being angry is ok, but let’s use that energy in some way that benefits us, instead of harming us, then maybe this gift could be a good thing as well. I’m not sure where to start with it, but tonight I told him to think angry every time he works on his karate punches and kicks and board breaking. Perhaps he will – perhaps he can channel this thing.