“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. Author unknown
What happened for you as you read this?
Why do you think you feel/think this way?
What have you learned from your training that can change the outcome or ending to this journey, for care partners and those living with dementia?
How can you and your learners MAKE A DIFFERENCE? Did you consider each GEM level as you read through the journey? After reading this “journey” I have never forgotten it,… please share your thoughts.