By Stephen Gaudin
It's hard for me to decide where this little story starts, though from everything that I've read I know somewhat how it will end. About 3 years ago I started telling my doctor that I was noticing some problems with my memory. I was 46 at the time. He said it was most likely just stress and normal aging. Now three years later I can no longer deny what is happening to me and realizing that there isn't much I can do to stop it.
That's something of the beginning and now, but trailing back a bit to a small turning point. I started having some problems at work considering behavior and complaints. This after years of getting top ratings consistently on all of my performance evaluations. I have always been an over-achiever and in my line of work, computer support, the ability of my brain to function at a high level is paramount. I knew I had ADD and thought that was most likely the problem since I had stopped taking medications for it about 3 years prior to getting my official letter threatening to fire me if my behavior was not corrected.
I went to a clinic that uses SPECT scans to help determine severity and treatment possibilities based on views of activity in the brain. While some feel this is inconclusive, one thing that they did say was that it appeared that I had, as they put it, "early indications of Alzheimer's." I was given a prescription for Namenda and given some general information about nutrition and such. As time has gone on one thing is becoming very clear to me: I am slowly losing my cognitive functions, especially memory.
The hardest part for me is the denial that others reflect back to me when I mention this. I'm not imagining it and it's not normal absent-mindedness. I have been lost in my life, but never have I gotten lost going somewhere I have been several times and become so disoriented that I didn't recognize familiar landmarks and roads. Even after reading the street signs I had no idea where I was or where I was going. That's not something you can tuck away as easily as you can when I mention that I put my keys down 10 seconds ago and now have no clue where I put them.
While the Internet is a great place in some ways, one thing I find as I peruse the various websites is that the dearth of information is for caregivers, not those of us who are watching our lives slowly fade away. In some ways I look forward to the time when I no longer realize what's happening, though I feel regret that most likely someone in my family will be burdened with me at that time.
I wanted to get this out while I still could, since I see daily instances of little things and bigger things as they slip away. I'm not sure if there are any accounts by patients to try to understand what the early stages are like, but I can tell you that it's depressing and scary as hell. I will try to express some of what is going on with me, though I am sure others react differently.
When this all started, as I said, no one seemed to believe that I had a problem; it was just some little thing that I noticed. I've likened what I am seeing in my own head to an Olympic runner who cracks the bone in his ankle. He knows something is wrong; he can't run as fast as he should be able to, but doesn't know why. You can tell him that he can run just as fast as he could before this happened as much as you want to, but it doesn't change the fact that he can't. It's kind of like that, but I'm the only one who can see what's happening. Is it any wonder that one of the first symptoms in the list for patients diagnosed with Alzheimer's is anxiety, depression, and paranoia? They know something is wrong but doctors and friends keep telling them that nothing is wrong and that they are just as able as they were before. Only, you know you aren't.
When I got lost going to my friend's house, I got confused at first and shrugged it off as daydreaming. As time went on I got frustrated, then frightened. It took me 3 hours to get to his house and he only lived 45 minutes away. I told him about it, nearly in tears, I was so upset about it. He just looked at me and laughed. I have never spoken to him again! I felt humiliated and dehumanized. I felt that someone who would laugh at me when I was severely distressed was not someone I should have as a friend.
I'm going back in to see my doctor, since I've noticed several incidents that have occurred recently. Again, it's hard to describe the feelings or what's going on in my head, but I'll try.
I was involved in a project at work where several people whom I knew were coming from different offices to participate together. One individual came up and started talking to me. I thought he was someone else. This was someone I had hired, who didn't look like the person I mistook him for; it was just that I knew from what he said that he was part of our group, and I remembered the name of one of the people who was coming, so my brain said that must be who it was. Since this incident I've found myself being introduced to people whom I know that I knew. It's strange because I am reading a book with a similar story line and that's how I feel. In this book a magician wipes all knowledge of a person from everyone. Only one person knows she existed and no one believes him. He says that they should realize that not remembering who did certain things with them was proof that she existed. It's sort of like that. For example, I know I hired this person; I know I knew him once because I can recall certain things that he was associated with. I just don't recognize him or remember that HE was the same person. I'm lucky that I have a couple of coworkers whom I trust who understand what's happening. They typically will try to subtly reintroduce people to me by saying things such as, "Bob's here to help with this project; where do you want him to sit?" They know that to formally reintroduce me to the person could cause problems for me at work, if it became known that I'm slowly losing my mental facilities.
I've found a lot of valuable items around my house lately. It's not funny really. I don't remember hiding them, but I must have done it because I live alone. I did have a friend's sister help me pack some items for a garage sale, and I accused her of stealing some of the same items. Not to her face or to my friend, only to myself, and I mentioned it to some people at work. I'm still quite functional; it's just getting harder and harder to cover the gaps in my mind and my inability to keep track of everyday items and tasks.
I have to write everything down, or I am most likely to forget to do things. I try to set up daily routines so that I can better imprint into my mind the things that I need to do. I haven't forgotten anyone crucial yet, or missed going to work, but I can tell that is a possibility in the future.
Some things I would ask of caregivers and family members are these:
Please don't tell me that I remember someone or something that I said or that you told me. I don't! And no matter how many times you tell me, I won't remember. You'll only make me more embarrassed, frustrated, or angry.
Please do gently mention the names of people that are coming to see me and what they are there for. If I am aware enough of who the person is, it won't sound like you're treating me like a child. If I don't know who they are, I will be grateful for your kindness.
Please don't think that because I can describe something that I can tell you what it is. One thing I've noticed is that I forget the names of things. I can tell you it's red and round, but not what it is. If you don't know what I'm trying to describe, you can ask questions and offer suggestions, but please don't say, "Come on, spit it out."
If I tell you I got lost and scared, try to understand and don't laugh at me. Think how you would feel if all of a sudden you forgot how to get to a location that you have been to many times before.
Finally, I'd say to those who are caregivers, thank you. I suspect I won't say that enough when this horrible disease is at the end of its cycle. I know it'll be hard on someone, and I would like nothing better than to never have to be a bother or a burden on anyone. I sometimes hope that I have the courage and mental capacity to end my life before that point, but fear that it will happen before I know it. I know I have some living to do before I get to that point, perhaps several years even, but I dread the idea of a loved one having to bathe me, feed me, or care for me as if I were a child. Yours is a somewhat thankless job, I am sure. Be assured, if we realize what you are doing and if we seem upset, it's not with you; it's with ourselves and the fact that we can't help you and hate seeing you have to suffer to help us.