Snapshots of Dementia: Hard to Swallow

Posted by Marti on June 23, 2020 in Dementia | 17 comments

Cough. Splutter. Choke. Spit. Repeat. If you lived at our house or followed us on our morning walks, this is what you would hear almost every day. Sometimes a little, sometimes a lot. And if you stayed with us, you might hear these sounds periodically throughout the day as well.

Any regular readers will have noticed that I’ve shared some dementia symptoms that surprised me. This one definitely did—for at least two reasons. First, I couldn’t find a doctor who paid attention when I mentioned it. And second, it appeared a few years ago, right around the time I first began wondering if Tom had some sort of problem. No list of initial dementia symptoms I saw at the time mentioned this.

Because Tom has chronic asthma, diagnosed in childhood, when he first started struggling with this choking problem upon awakening, I thought his asthma was getting worse. When we walked our dog in the morning, he would often cough and spit multiple times in only a few minutes. I tried not to say it, but I would think what you may well be thinking right now: Gross!

But I was also concerned. I urged him to tell his PCP. I tried to get him to see a pulmonologist (respiratory specialist). When he didn’t comply, I kept reminding him.

When we visited the first neurologist, I didn’t mention this coughing/choking/spitting problem because I thought we were looking at Tom’s mind and memory. I had no idea they were connected.

Two years later, after our life had changed drastically and I knew I needed to get some medical answers, I mentioned this issue to three different neurologists. Not one seemed concerned. The most one staff member said was, “We’ll deal with that later.”

But still and again, I knew something wasn’t right.

So many of you have commented about how well I’ve done and how strong I’ve been. Please know that what I’m trying to do is to show you how not well I’ve done and how many things I missed along the way. I hope that, by sharing my mistakes, I’ll help prevent you from making the same ones. I deserve no hero badges. And God gets all the credit for the ways I’ve learned and grown.

Again, every dementia is different, and every patient is different. I don’t know why this issue, which I now know is called dysphagia, showed up so long before Tom’s diagnosis. But earlier this year, when we had our first visit with his PCP here in South Carolina, I brought up the coughing/choking/spitting one more time because it seemed worse.

The doctor looked at me. “Let me see about that.”

Grabbing a tongue depressor, she headed over to Tom, who was seated on the examining table. “Open wide.”

It took all of 30 seconds for her to discover what no one else had thought to check. “No wonder he’s choking. He’s lost his gag reflex, probably some time ago. When you and I sleep at night, we automatically swallow any drainage we produce. His brain doesn’t tell him he needs to do that, so he wakes up choking and spitting.”

This time, I was the one having trouble swallowing. No gag reflex? Why didn’t anyone else check for this?

“He’ll probably need a swallow study, and he may have to go to thickened liquids at some point,” his doctor said. “Prop him up on an extra pillow at night, and let’s check on this the next time you come back.”

That “next time” happened a few weeks ago. Although the extra pillow helped with the morning choking, I had noticed him choking more often during the day, so the doctor ordered a swallow study. A speech therapist gave him various solids and liquids mixed with or coated with a barium paste. A radiologist filmed him swallowing them, and the therapist went over the video afterward. The results showed several definite, dementia-related problems:

—Delayed swallow (his brain doesn’t tell him to start swallowing soon enough).

—Incomplete swallow (some of the food or drink remains in the back of his throat even after he swallows).

—Near-aspiration (his epiglottis doesn’t close completely, so some of the food starts to head down the “wrong pipe”).

The therapist gave us some swallowing exercises and other instructions to assist with this. As his disease worsens, he will have more difficulty swallowing, and I will need to monitor his eating and drinking more closely.

I don’t know that doctors would have diagnosed dementia earlier if I’d mentioned this problem sooner than I did. But what I do know is that I should have pushed harder. Asked more questions. Been a better advocate much earlier in the process.

So that’s what I urge you to do. Don’t be like Marti, or at least like Marti used to be. If you have a friend or loved one struggling with what you believe may be dementia or other cognitive issues, persist. If something “just doesn’t seem right,” it very well may not be. You know your loved one. If the answers a doctor gives you don’t satisfy you, go to another one. Read everything you can. Make phone calls. Seek answers. In this situation, information isn’t everything. But it’s a lot.

If you have a friend or loved one with dementia, did you notice an issue like this? Is there something else in your loved one’s life that makes you wonder? Feel free to share in the comments below. Your story matters.