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.