Snapshots of Dementia: The Great Depression (or not)
If your snapshots are anything like mine, they fill a shoebox (OK, mine fill an entire trunk) and most are in random order. I have long-ago dreams of putting them in beautiful, chronological albums (I’m sure God has a special place in heaven for those who have achieved this wondrous feat), but so far, it hasn’t happened.
I don’t think it will happen with these snapshots either. So, although I’ve written somewhat chronologically, you may have noticed I’ve also skipped back, forth and around as I’ve focused my lens on different parts of our journey and of Tom’s disease. And I imagine that, even if you’ve never been exposed to dementia before, you’ve seen that this disease is exactly like that.
Messy. Disorganized. Uncomfortable.
I’ll move us forward a bit on our timeline to our visits with a second neurologist. We’re all the way up to early 2019 now, and many things have changed for Tom. Just the year before, his first neurologist told us (for the second time) that things were basically fine, that he just had some short-term memory loss and (for the first and only time) that he was “better than the 80-year-old Alzheimer’s patients I see.”
A neuropsychologist had also done extensive testing (which I eventually found out our insurance did not cover, although no one told me that at the time; I mention this so anyone reading will check first and not have to shell out the nearly $1800 I did almost a year later). This doctor concluded that Tom was very intelligent, probably had adult ADHD (a diagnosis he had already received) and was dealing with shame as the result of some of his extremely poor and uncharacteristic behavioral choices over the past few years.
No one told us about frontotemporal degeneration (FTD), behavioral type. No one mentioned that dementia could not only cause memory loss and confused thinking but that it could also cause personality changes of the extreme type we saw in Tom. No one mentioned that perhaps he didn’t have a moral problem but a mental one.
That’s why I have such a deep commitment to tell our story. I did suspect a problem; I just didn’t realize so much of what I was seeing in my husband was tied to what we now know to be FTD.
But I digress. Finally, we visited a second neurologist. This one came recommended from more than one friend. I was confident that this time, we would get some answers. So much had changed in Tom’s life that I felt sure the doctor would see the problems right away.
We had (well, I had, because Tom could no longer fill out anything so complicated) lots of paperwork to fill out before this visit, but I didn’t mind. I wanted the doctor to have information. I even added a copy of a letter from our former pastor about the changes he had seen in Tom’s work ability, moving from “highly competent” to much less than that over the more than five-year period Tom had served under him.
At this visit, the neurologist and her staff asked lots of questions. In fact, we spoke more with the staff than we did with the doctor. She examined Tom briefly and then told us she wanted more tests: an EEG. An MRI (his last one had been two years before). Some blood work.
Amazingly, we were able to get all those tests completed within a month. When we returned to her office, her staff again asked many questions (I remember mentioning my concern about Tom’s coughing and choking, which was getting worse, and being told, “We’ll deal with that later”) and then the neurologist herself came in. Again, she examined Tom briefly and had him walk back and forth. He stumbled and caught himself on the examining table, but she didn’t mention that.
Her main concern, she said, was that he was suffering from depression. At this point, he took no medication other than vitamins. His EEG and blood work were normal other than that he had low Vitamin D, which can cause confusion, so she gave him a prescription (we had to stop that recently as his levels had gotten too high), and also needed a Vitamin B supplement. Easy-peasy.
But his MRI did show some changes. The hippocampus (the brain’s memory center, located in the temporal lobe) had shrunk, she said. She also said he had a “weird brain” and mentioned a benign cyst, one that shouldn’t cause any concern.
However, she blamed most of his memory problems and other issues on depression. She prescribed a low-dose antidepressant and told me, “I need to watch him closely.”
I took the prescriptions and had them filled. But as we walked out of her office, I knew this doctor would not “watch him closely.”
I wouldn’t give her the chance.
As of these appointments in January and February of 2019, my husband had lost two (soon to be three) jobs, had dramatic memory loss and personality shifts, lost his sense of smell, and made multiple poor decisions that had changed all of our lives. His appearance had changed; he often looked out at us with a blank stare psychologists might call a “flat affect” but I think of as a “dementia face.” All of our children and his former boss affirmed these dramatic shifts and knew we needed answers.
When I later looked at the printed results of the MRI, I saw that his hippocampus was only in the 26th percentile for people his age. So in two years, he had gone from “nothing notable” to this.
And she was blaming it all on depression?
I agreed: Tom was depressed. Who wouldn’t be after suffering all the losses he had? But I wanted to know more. And I was sure someone out there could tell me.
I didn’t know where to turn other than the One to whom I always turned. And that’s what I did, asking my prayer team to join me. Yes, we were getting closer to the answer.
It just didn’t feel like it at the time.
If you or someone you love is struggling with some of the changes I saw in Tom, or other changes that concern you, please seek medical attention. Depression can cause some serious problems, and I do not mean to imply otherwise. I just believed, then and now, that Tom’s problems extended further.
It is never wrong to seek more information or knowledge. I needed to know more about what was going on with Tom so I could know how best to care for him. If you have that same need, keep pressing, pushing and praying. And feel free to leave your comments below. Your story matters. And so do you.