Living with a thief – Dementia

It’s been months since I’ve been able to write anything on my blog. I used to love to write. I guess I still do. But being able to is the problem. Months ago I thought I was having problems with writers block. But it lasted for months and the blankness didn’t just affect my writing.

A little over a year ago, at 38, I developed dementia along with my Parkinson’s. I had symptoms of memory losses and blackouts along with some confusion and speech problems. I started a medication for Alzheimer’s. About six months later my symptoms got worse so we increased the dosage of my medication. I have am deficient in my working memory, which is the system that actively holds multiple pieces of transitory information in the mind, where they can be manipulated. I struggle with apathy, and problems with attention, focusing, concentration, disorientation, and memory to name a few. Even my personality has changed.

Today my dementia is progressing. Lately I seem to be experiencing what’s known as sundowning. Sundowning refers to a state of confusion at the end of the day into the night. Sundowning can cause a variety of behaviors, such as confusion, anxiety, aggression, wandering, agitation, and restlessness.

Sometimes I can also experience what’s known as night wandering in the middle of the night. It’s just as the name suggest. I get up in the middle of the night unaware and start wandering around the house. A few times I’ve been disoriented and lost unable to find my way out of a room. Eventually I come to not knowing how long I have wandered around. My fear is falling down the stairs or wandering outside.

How does all this affect my day to day life? Paying bills, doing housework, cooking dinner, watching TV, etc? Well I don’t work. My memory and concentration is too bad. I’m unable to multitask and get confused easily. Not to mention the Parkinson’s. So I take care of the house, which is not that complicated for me so far. I’m also still capable of doing the bills for some reason. Yet I’m unable to maintain my focus on a book. As far as something as simple as watching TV, it’s become an activity of picture watching. My brain just can’t focus.

Nor do I drive anymore. I haven’t driven in 4 years. Mainly due to the Stage 2 Parkinson’s but also in combination to the early symptoms of dementia.

But how am I doing emotionally with this? I’m a bit angry and a little scared. No two people with dementia are alike. Each will progress at their own pace. I may never progress beyond a mild stage. I may progress well beyond that. I’m angry because of all the trials and battles I’ve faced and won in my life I could possibly be beat by my own mind.

I’m scared because I could possibly be at the mercy of my damaged brain at some timer down the future. I’m scare for my wife and the burden it will put upon her, as well as my children. It has already caused strain with a couple of my children. In these instances I don’t know what to do.

But I can’t sit back and let this beat me and get me down. To do so would let it win before the fight has already started. I have already begun to see some things different and I have the dementia to thank for it.

For one, I don’t really get mad or angry. At the most I can get aggravated. But I’ve come to realize that with anger being a secondary emotion it’s a wasted emotion that only results in unproductive actions. For example, I don’t hold grudges or bitterness. I’ve reached a point to where I don’t want to spend what lucid time I might have left holding on to negative emotions. I refuse to walk in this world this way. So I’ve learned by Christ’s example of grace and mercy and of forgiveness.

Writing this was hard. Both just getting it off my chest and getting my thoughts into words. It literally took me at least almost four hours. Writing is not what it used to be for me and that makes me sad. But I’m going to do my best to keep this. To document my days with dementia. If at the most it should help stimulate my brain somehow.

On another note I realize I just disclosed a very personal diagnosis of myself. Actually I had hinted to it in previous blog posts but never specifically addressed it. I wrestled with this. Do I write about this and reveal this? I concluded why not? Maybe some will reach out. Besides I’ve never had a problem disclosing other parts of my life for others. So here it goes.


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