Writing with Dementia

When I was in high school I hated to read and write. I was still well proficient in it, yet I still hated doing it. It was boring and coping with undiagnosed with adolescent bipolar that was predominantly

depressive I hadn’t learned to tap into my creative energy at the time. But I focused on college prep classes in high school and even took a college course during my last semester of high school. Even

during my comp classes in undergrad classes I hated to write. But when I started my classes in my psychology program I focused on research and writing.

In college my bipolar was beginning to become out of control so I began journeling in 2002. Once I began journaling it took off with a passion that flowed from the depths of the darkest parts of my mind that included suicidal ideations in the midst of my most darkest hours of depression. Words became like a mixed salad as I ran from one topic to another in a manic phase.

The more I wrote the more of a passion it became. What started as an experiment turned into being a part of my life. I filled journals with my hurts, my laughs, my frustrations and fears. I filled them with the joys of my life. I wrote poems that spoke of the depths of suicidal ideations and the blackness of what I often refer to the “Nothing Feeing.”

Once dementia hit all this changed. I went through a period what I thought was writers block. It took months for it to dawn me that my dementia was eating away at the creative life within me and stealing the very thing I loved to do. The very thing that gave me a voice. But once lasted for more than a few months I thought to myself something has to be more than writers block. By the time I realized it I had already succumbed to apathy and my cognitive functions slowing down.

Writing involves a series of complex activities in the brain. It’s not as easy as having a thought and then putting it down on paper or typing it. The person must determine what they wish to express. Not everyone has good self expression skills in the first place. Complicate that with dementia and it’s worse. They have to find the correct words and grammar. Imagine reverting back to a middle school age language barrier. Then they have to physically write it out. Dementia impacts the penmanship. Mine is mainly due to my Parkinson’s but I can’t even write legibly. I have to type everything I want to convey. Because the damage from the dementia, a person’s ability to perform these activities become affected. If the person affected finds it difficult to gather their thoughts and express themselves, this may lead to shorter or unfinished sentences and paragraphs. Simple sentences are easier to make leading to less colorful and creative writing. Recalling words or spelling of words that are seen as underdeveloped are due to memory impairments. 

From a standpoint of the development of the brain, people developthe skills to write only much after spoken language. We see this in dementia, when writing is often lost even when parts of language is well preserved.

Writing can be hard for me at times. Many times actually. My brain doesn’t work like it used. Much of the time I find my mind silent or confused. Many times I don’t comprehend things that are going on. When I don’t understand things I simply don’t have an opinion on matters to have anything to say. Just getting my words together to make sense can be a daunting task that can sometimes take me up to four hours to write a two page blog. Many times I know what I want to say but I just don’t know what the words are to say it. Sometimes I have resort to rewording my thoughts completely because I don’t know how to say what I want to say.

Then there is the problem of apathy. Both Parkinson’s patients and dementia patients suffer from apathy. What is apathy? It’s basically the content feeling of doing nothing. That’s the most basic definition I can give. It’s not laziness. The mind just finds it comforting doing nothing and putting no effort into anything. Thinking is slowed almost to sudden stop. Apathy is miserable. A part of you cares of the fact that you don’t care. You just can’t do anything about it. You can’t muster up enough self will to will yourself out of it. Then again there’s another part of you that doesn’t care that you don’t care. It’s comfortable. It’s an excuse to not try.

For a while I was angry I couldn’t write. I had been managing another blog that focuses on my bipolar but I hadn’t written anything in months. Eventually I mustered up a few vague open letter posts. Nothing I was passionate about. I was angry about what I felt what was stolen from me. A vital part of myself has been taken from me. 

But within the last few months I have found myself writing again, both in my blogs and in my journals. I’ve learned to take advantage of peak creative times during the day. I write something each day no matter how little it is. I write letters to my  kids who I hope one day will be able to read them. I write letters to my wife who will one day read them when I can no longer communicate with her.

Writing is harder than it used to be. But somehow that makes me appreciate it more. I don’t take it for granted. I work at it harder. I love it. It is a passion of mine. It will live on and speak for me when I cannot.