I find the human brain fascinating. As my husband progresses with Frontotemporal Dementia, which may have been caused by Traumatic Brain Injury- a result of too many blows to the head I am curious about what this disease feels like to him. The life expectancy of a person diagnosed is on average 6.5-7 years. He is at 4 years 4 months. Here is a sneak peek of dementia through his eyes.
Do you notice any change in the dementia?
I notice bright lights that flash. You know how when you are driving down the road and you close your eyes and you see change in light and flashes? That happens to me all day. It feels like my brain is pulsing only it isn’t my heartbeat.
What else do you notice?
I notice that I am tired all the time and I feel weak. I hate it. I’ve always been strong, and I’ve always been able to work long days. I can’t keep up and I don’t really care. That’s different.
I’m also dizzy most of the time. My head hurts.
Does it scare you?
No. Sometimes I feel foggy.
Can you tell when you have a bad day?
Sometimes I can tell. I just feel funny. It’s hard to explain.
Do you notice the days that you have a hard time with word retrieval?
(We just returned from a visit to see our daughter 3 days ago.) What do you remember about the airport?
Not much. I remember that it was loud and confusing, and that I couldn’t look at anyone except you and the computer. It was too scary.
Did the earphones help?
(Without hesitation) Yes. It blocked out the noise.
What is the first thing you remember about the trip?
(Leaving the airport) Seeing the sign for the Bill and Hillary Clinton Airport and hearing Lizzie talk. We must have gone right to bed. I don’t remember how I slept.
Do you remember her apartment?
Yes I do. (Followed by a description that was correct).
What did we do on vacation?
We saw Lizzie.
What else did we do?
(After some prompting) We went to Home Depot… and we sat by the pool.
We saw her classroom.
What part did you not like?
Leaving Lizzie… but I’m glad to be home.
What are your wishes for my future?
I want you to be happy. I want you to smile every day. I want you to find hobbies. I want you to live.
What scares you?
Dying does not scare me. I hope that I can look down on you and see that you are happy. Not having control of my body scares me. I don’t want to lose control of my mouth, or have people have to take care of me. That would be embarrassing. I don’t want that.
This world is falling apart. I wonder how long before the rapture?
I wonder what is happening in my head.
Well, you have parts of your brain in the front and behind your ears that are dying. When you are trying to think, sometimes your thoughts have to reroute and find a new path because your thought reached an area that it cannot go through. (Running my finger across his forehead).
Oh. That’s weird.
In heaven you will spend time with your parents. You have missed them very much.
The bible says that we will spend eternity worshiping. I hope I have time for gardening.
Hey, that man is walking 5 dogs! I love the ocean. That loon has something long and white in its mouth. I like that red boat. My coffee is gone. I don’t want supper. I like cheese.