The Experience of Dementia as a Journey...

When I first started in this industry - I was able to go through a fantastic training program on caring for those with dementia.  It really got me hooked, and I think its why I like to relate to those with the disease as well as volunteer my time with the Alzheimer's Association.

In one of those first training classes, we were given a story to read that really made the concept of the disease hit home for me.  I have been meaning to share it, but wanted to research where it originally came from before I posted it.

I hope it helps any one who knows someone with the disease.  It was helpful to us that work with them to know what it *might* be like for them...

"The Experience of Dementia as a Journey"

I am going on a long journey by train. As I begin, the city skyscrapers and country landscape look familiar. As I continue my journey, the view reminds me of times gone by and I feel relaxed and comfortable. The other passengers on the train appear to be feeling the same way and I engage in pleasant conversation with them.

As the journey progresses, things begin to look different. The buildings have odd shapes and the trees don't look quite the way I remember them. I know that they are buildings and trees, but something about them is not quite right. Maybe I'm in a different country with different architecture and plant life. It feels a bit strange, even unnerving.

I decide to ask the other passengers about the strangeness I feel, but I notice that they seem unperturbed. They are barely taking notice of the passing scenery. Maybe they have been here before. I ask some questions but nothing seems different to them. I wonder if my mind is playing tricks on me. I decide to act as if everything looks all right, but because it does not, I have to be on my guard. This places some tension on me, but I believe I can tolerate it for the remainder of the trip. I do, however, find myself becoming so preoccupied with appearing all right that my attention is diverted from the passing scenery.

After some time I look out the window again, and this time I know that something is wrong. Everything looks strange and unfamiliar! There is no similarity to anything I can recall from my past. I must do something. I talk to the other passengers about the strangeness I feel. They look dumbfounded and when they answer, they talk in new language. Why won't they talk in English I wonder? They look at me knowingly and with sympathy. I've got to get to the bottom of this, so I keep after them to tell me where the train is and where it is going. The only answers I get are in this strange language, and even when I talk, my words sound strange to me. Now I am truly frightened.

At this point I figure that I have to get off this train and find my way home. I had not bargained for this when I started. I get up to leave and bid a pleasure good-bye. I don't get very far, though, as the other passengers stop me and take me back to my seat. It seems they want me to stay on the train whether I want to or not. I try to explain, but they just talk in that strange language.

Outside the window the scenery is getting even more frightening. Strange, inhuman-looking being peer into the window at me. I decide to make a run for it. The other passengers are not paying much attention to me, so I slip out of my seat and quietly walk toward the back of the car. There's the door! It is difficult to push, but I must. It begins to open and I push harder. Maybe now I will get away. Even though it looks pretty strange out there, I know I will never find my way home if I do not get off the train. I am just ready to jump when hands suddenly appear from nowhere and grab me from behind. I try to get away. I try to fight them off, but I can feel them pulling me back to my seat. I realize now that I will never get off this train; I will never get home.

How sad I feel. I did not say good-bye to my friends and children. As far as I know they do not know where I am. The passengers look sympathetic, but they do not know how sad I feel. Maybe if they knew they would let me off the train. I stop smiling, stop eating, stop trying to talk and avoid looking out the window. The passengers look worried They force me to eat. It is difficult because I am too sad to be hungry.

I have no choice now. I have to go along with the passengers because they seem to know where the journey will end. Maybe they will get me there safely. I fervently wish that I had never started out on this journey, but I know I cannot go back.

Dawson, P., Wells, D.L & Kline, K. (1993) Enhancing the Abilities of Persons with Alzheimer's and related Dementias.  New York: Springer Publishing Co: pp xiv-xv

Photo: Mattheus Bertelli/Pexels