This is dementia. It's not just a memory problem.
What you read in this blog is purely my own personal experience in dealing with Lewy Body Dementia every day.

This is not meant to offer any medical or legal advise.
I have no professional training in care giving or experiences in formal writing.
I'm just a woman that loves her husband deeply and wants to provide him with the best quality of life he can and chooses to have.
My prayer though this is "Lord, What am I learning from this; how can I use it help someone else and to glorify You?"
If just one person finds comfort in this public blog. I will feel like it was a success.

Saturday, August 13, 2011

The Experience of Dementia as a Journey –Author Unknown

An amazing caregiver in her own right and a wonderful friend, Bette, posted the following story and I loved it so much I wanted to post it here. If for no other reason than to read it again for my own self. I think it speaks for it's own self.

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. Wow... this is such an awesome piece... it's so true! I see it on the faces of the folks in the home. Bob, one of the residents where my mom is living believes that he's on a train.

  2. This is such a great description of the experience of an Alzheimer's patient--very helpful analogy, Kathy. Life does seem strange to my husband, my words and the scenery. The other day I drove on a road that he used all the time coming home from his work. He did not know that road. He accuses me of not making sense when I talk also.

  3. Perhaps it is because I don't have Alzheimers (my diagnosis is "idiopathic dementia," that I react differently. I stay home 99% of the time but when my roommate does drive me somewhere (usually for a doctor visit) I find the fact that I don't recognize most of the roads relaxing. Not having any idea where we are allows me to just relax and enjoy the drive itself and completely leave the driving to the driver.

    This applies to more than just driving - for example, I spill things much more often now and while I know I would once have berated myself for doing so now, it doesn't bother me at all. I just clean up whatever mess I made and let it go. I am finding that as I am apparently entering the midstages of my dementia, I am actually becoming much more relaxed about many things (as opposed to the type A personality I have been for most of my life.)

  4. Hey Sue!

    Yes, I loved this story :)

  5. Hi Carol :)

    Hubby made the comment to me today, after I asked him if he wanted lunch, that he had a hard time understanding what I said. He thought he knew but didn't understand what I said.
    I believe the constant "What?" to everything I say is less about hearing and more about not understanding the words.

  6. Hi Stumblinn,

    It's a good thing you feel calm and relaxed.
    The alternative is not only distressful for Hubby, but for myself because I don't know how to comfort him.

    For the most part Hubby is docile also. A VAST change from his "normal" pre Lewy Body self. Behaviors attributed to his PTSD. Lately, however, he has exhibited much anxiety and anger. I'm used to this but find that there is no reasoning that can penetrate his thought processes.

    I hope your unwanted ride continues to be serene for you :)

  7. I agree with Kathy, Stumblinn, you are so serene and your blog is wonderful. I reposted this train ride on Plant City Lady and Friends.

    Kathy, the anger is part of dementia for some. Like you I try to minimize it by giving in to some obsessions. Love your blog as well.

    On the journey with you two!

  8. Thank you for your kind words, Kathy and Carol.


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