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.




Memory is a CRAZY thing. Really.

According to two doctors named Shonkoff and Phillips in a 2000 National Academy of Sciences journal, the way our memories develop is fascinating.

First, we are born with almost all the neurons we will ever need – over 1 billion of them. “During fetal development, neurons are created and migrate to form the various parts of the brain. As neurons migrate, they also differentiate, so they begin to “specialize” in response to chemical signals. This process of development occurs sequentially from the “bottom up,” that is, from the more primitive sections of the brain to the more sophisticated sections.” So, basically the fetus develops the brain of say, a lizard – all fight or flight – all survival, then progresses up the evolutionary chain until it has the brain of a human. All these cells – finding their way to the right spot – and CHANGING as they go to become what they need to be.

Second, in the first 3 years of life a baby forms over 1,000 TRILLION synapses. They are constantly forming synapses, even while they sleep. Synapses are the electrical path ways that tell us what works and what doesn’t work – that help us remember where the good berries are, which berries killed our cousin, which berries gave us hives, and which berries to never, ever touch. (so to speak) Synapses are our memories.

Over the next 8 years or so (until adolescence) the child “prunes” their synapses – they cut back the ones they don’t need. They let go of the ones that didn’t work, don’t benefit him, don’t help him in some way. He also strengthens the ones that do – like walking, it becomes easier and easier – more coordinated over time because that impulse goes over that synapse a billion times and it “travels” more efficiently each time it does. By the time that baby is an adolescent he/she will have trimmed his brain down to all the synapses they will use for the rest of their life. We keep only about half of what we originally develop. Those synapses can adapt and change, but we don’t make new ones later in life.

One more amazing development? The child has to go through “myelination”. They have to form the myelin sheath. This is a white fatty tissue that insulates the brain tissue in a mature human. It helps the synapses fire properly – allows them to have a clear, clean path to send an electrical impulse across – so it doesn’t end up somewhere in another area of the brain.”Young children process information slowly because their brain cells lack the myelin necessary for fast, clear nerve impulse transmission. Like other neuronal growth processes, myelination begins in the primary motor and sensory areas (the brain stem and cortex) and gradually progresses to the higher-order regions that control thought, memories, and feelings. Also, like other neuronal growth processes, a child’s experiences affect the rate and growth of myelination, which continues into young adulthood.”

THIS is why I have to tell my son 12 times to go get dressed before he hears me, but he can balance and jump much better than I. He is working on the motor and senses – not on the processing part right now. (I assume – and will try to remember this assumption tomorrow when he doesn’t hear me 5 times in a row. I will tell myself “he doesn’t have enough fat in his brain – calm down mama”)

I used to have a semi photographic memory. If I wrote something down or read it I would remember it. I couldn’t picture the page in my head  like you see in the movies “chapter 3, page 25, second paragraph, it says…”. What I COULD do was remember anything I had ever read – the context, the basic thought behind it, the story line, the necessary information. I didn’t need to keep a calendar – if I had an appointment I wrote it down, it was in my head, I could throw away that paper and still I could remember it 6 months out. If I needed to remember an address or phone number I could. I could remember many more childhood memories than most of my friends or siblings. That started changing about 3 years before I got pregnant my son. Which may or may not be when my thyroid problems started. Since I had my thyroid out I have what we like to call “thymentia” – I can’t remember squat. Really. I can’t remember appointments, times I said I’d meet someone, I can’t remember the dates of anything besides family birthdays. I keep a calendar now, and still forget things. I can’t remember names which really frustrates me – I never had that problem. I know I have read a book by the title, but can’t remember what it is about without reading a few pages. I have lost a lot of childhood memories – even more recent ones – and will remember then when reminded, but can’t access them on my own.

Then my mother was diagnosed with early onset alzheimer’s. It has really taught me about memory. You assume, when you hear someone has alzheimer’s, that you will see a steady decline and they will loose all their memories at kind of an equal rate – or – like you see in the movies or books – you think they will forget the most recent things first and their childhood memories last.

I have done some research into the loss of memory, what alzheimer’s really is – medically, I have read books that are written by patients or for patients or from the patient’s view point. This is all very fascinating, but every patient is different.

This is what I have observed:

Memory is like a tapestry. When you are loosing your memory it’s like a thread being pulled out of your brain – one thread at a time gone. There seems to be no rhyme or reason as to when or where it will be pulled from next. It just gets pulled out, and then it’s gone. It doesn’t seem to pull all from one area at once – not like, for example, the lives of the granchildren first, the lives of the children next. Or even names of people you have met recently first and names of people you knew long ago last. It seems to be random. Yes, the higher functioning goes first – I suppose it’s just like the brain development in a fetus – but backward. But the memories – the actual memories – I can’t see any order in the chaos. All those precious precious threads – the things that make a person who they are – being pulled out one at a time until one day the tapestry looks almost nothing like it used to – there is only a slight resemblance to the old picture. I assume one day it looks mostly like another picture with lots and lots of holes in it.

It is funny to me. My mom can remember some family joke about some person we know in the community, but she can’t remember something traumatic that happened to my brother in college. She can remember the specifics of my son’s IEP, or the name and characteristics of a disorder my cousin’s child may or may not have; but can’t remember the vacation we took my senior year.

The worst thing is the torture she feels about forgetting. She knows threads are missing. Knows the picture doesn’t look quite right. It really hurts her to realize that. But she doesn’t know what she doesn’t know unless we are talking about something and she realizes this is a thread that is already gone. I keep telling her she is just finally operating on a level that is “normal” – she has always been very high functioning and did more, remembered more than the rest of us. She used to read 3 – 4 novels a week while working full time at a very demanding job and taking care of 4 kids. But the statement that she is finally on “our” level doesn’t seem to comfort her. (I suppose it wouldn’t me either if I wasn’t already on this level. LOL)

She can see the tapestry changing, and can’t stop it. And neither can we.