Snapshots of Dementia: Tangled

Posted by Marti on June 18, 2020 in Dementia, Uncategorized | 4 comments

“They told me they would take care of it,” Tom told me the other day.

“Who? Who would take care of what?”

It took at least three or four more questions for me to pull enough from him to know what he meant. He had called our pest-control company to see if they could return to our home to take care of a problem. Because he often rambles or talks in circles now, I try to listen in on calls like this when he insists on making them. This time, he had gone to the other end of the house.

But what he did in this brief conversation is something that’s happened many times in the past few years. I call it “beginning in the middle.” He starts partway through what most people would consider a normal train of thought. It’s as though he assumes I know what he is thinking before he says it. And through the grace of God, sometimes I’ve learned to do just that.

A few months before we moved, I was at work, and Tom sent me an email that “began in the middle” and thus made little sense. But God, the revealer of mysteries, helped me interpret what he meant and give the answer he needed.

Tom didn’t think anything unusual had happened. But by this time, I did.

Of course, before I knew he had frontotemporal degeneration (FTD), I couldn’t figure out why these communication mixups kept happening. And although I suspected something was wrong, I didn’t see how these strange episodes fit into a pattern of anything.

Except they did. I don’t ever see the term “tangled” on a list of dementia characteristics, but that’s how I picture his thoughts. So often, they seem hopelessly tangled, the way a ball of yarn looks after a kitten gets hold of it. Sometimes a piece breaks free, and we can follow it for a long while. Other times, one tangle only leads to the next.

I believe this “tangled” problem relates to the loss of executive function I mentioned in my previous post. It’s one of the reasons I believe Tom can no longer hold down a job. The more his symptoms increased, the more tangled his thoughts and behaviors became. And it seems almost everything he touched (bill paying, taxes, work, and more) became tangled as well.

Back when he still handled our finances, he never wanted to set our mortgage in Florida up on automatic payments; he preferred to pay the bill himself every month. But for at least two years, I often found him scrambling to pay it at 11 o’clock p.m. the day it was due, then running into a problem with the website (in his tangled brain, it was always the website and never him). The next day, he would call and (because he still had his extroverted charm) talk his way out of a late fee.

And yet—I didn’t question him. I honestly believed for a long time that the website went down or was not user-friendly or any one of a number of reasons he honestly thought were the truth. Even today, when he struggles to navigate his favorite online golf game, in his tangled mind, the app is the problem—not his dementia.

While this lack of accepting blame is very characteristic of his behavioral type of FTD, it is not at all characteristic of Tom. He was always quick to apologize, admit blame and ask forgiveness. So you would think I would have had a clue when these tangled episodes became more and more frequent.

And ultimately, I did. Although I still thought we were dealing with simple memory loss, as I watched other things in our life get tangled, I felt a deep sense of unease. At work and at home, decision-making took him more and more time and effort. Anything else that required concentration did too.

I’m still untangling some areas of our lives. With help and wise counsel, these areas will improve. But short of a miracle, Tom’s thoughts will only grow more tangled. And one day, instead of starting a sentence in the middle, he won’t start one at all.

Have you noticed this “tangled” problem in the life of your friend or loved one with dementia? Has their communication given you cause for concern? Once again, if you notice some troubling symptoms, please consider seeking medical assistance. And if you’re not ready for that yet, take notes on what you see. They may help you make some wise decisions before your life becomes tangled too.

Feel free to share your thoughts or experiences here. Your story matters.