Tuesday, August 16, 2011

The Experience of Dementia as a Journey –Author Unknown

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 the 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 a 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 pleasant goodbye. 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 beings 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 a 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 back home if I do not get off this train. I hear the door shut. They take 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 goodbye to my friends or 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.

Author Unknown


  1. Oh my,what a horrific feeling this must be--it certainly sheds light on what is happening to dementia patients. We all need more compassion to treat them as least as thoughtfully as we would a lost traveler!

  2. You said it, Carolyn! Thanks for visiting this blog and learning of our journeys. My husband is still in stage one, but I don't know for how long. Jake might be in stage two now.

    We went to a 100th birthday Saturday. We had been talking about this event for weeks. But when we got to the church where the party was, my husband asked if we were going to a wedding or a funeral. I am his short-term memory now, and he knows it.

    Sally was out and about and their granddaughter went to their house; her grandfather Jake said she could go play elsewhere. Her parents and Sally didn't know where she had gone when her grandfather Jake gave her permission to visit others. It all worked out in the end, but these incidents show our journey's.


  3. The author of this story gave a very insightful look into the mind of someone with dementia. So sad!!

  4. Thank you so much for this post. I hope you don't mind but I copied it and forwarded it to all my children and friends. I also linked them to your blog. This story is very insightful. I will also bring it to our support group. My husband is at about the same level as yours is. Please keep writing.

  5. Marjee,

    Good to hear from you and know we are in this together. Thanks for passing on this quote that I got from elsewhere and also for passing on my blog. It takes courage to go to those support groups especially when we see what's coming.