Author, Collaborative Writer, Editor - Learn More

Snapshots of Dementia: The Great Depression (or not)

Posted by on August 4, 2020 in Dementia | 6 comments

Photo by Stefano Pollio on Unsplash

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.


  1. Wow…. I’m sitting here reading this, practically screaming. “Depression is a SYMPTOM!! What is the cause?!?!?”

    When are we (American medicine).going to stop treating symptoms -usually with drugs – and start addressing causes?? Oh my goodness. This gets me so upset.

    Oh yah and the “here’s a bunch of tests we need to run, but insurance won’t cover them”….. Grrrr.

    Love you guys.

    • I didn’t mean to raise your blood pressure, haha. But yes. This whole experience has convinced me of the brokenness of our system. Thank you and love you too!

  2. I think the thing that is troubling me the most is how many doctors just didn’t get it…and they weren’t focusing on the real issues that were happening in Tom’s life and body. This is rather concerning to me because how do we know who to trust anymore? Yes, God first and always…but I know you were seeking God’s direction in all of this, and yet it still took so long to find a doctor who knew how to treat Tom. I hope you can read this comment, because the comment form print is very very faint and small and I can barely see it as I type, so if there are typos, it is the format. I don’t know if you can do anything to fix that. Wondering if anyone else is having a problem with this? Anyway, I am continuing to pray for you and Tom. And I am paying attention in case we should face similar issues in the future. Thank you for being so willing to share your story with us. God bless you both.

  3. Praying for you and your family as you make this journey with Tom. Your writings have really opened my eyes to this disease and also made me realize for sure that we are our own advocate even when dealing with doctors and medical staff.
    I have always been your fan and especially when you pray out loud. I know this sounds crazy but I have never heard a person pray with such heart and comfort as you do. Love you Marti.

    • You’re so great. I can’t believe you would even remember my prayers, but thank you! Prayer is still my joy and is sustaining me through all of this. I’m thankful the posts are helpful! Much love to you and your family!

  4. Sam too was diagnosed with depression and since his other lab work appeared near normal, we, even he, went with that. His depression turned out to be Non-Hodgkens Lymphoma which by the time it was discovered was stage 4. Yes the system is broken. No one does hands on physical exams anymore – had that been done they might have noticed his enlarging lymph nodes. I now question everything – I thought I did then, but now know different. Always expect the extreme and rare worse case scenario and work your way back from that.
    I lost the love of my life and have to live with whether or not he could have been saved if treating physicians were more aware of the extreme. I know your experiences will help others avoid the pitfalls you have had to wade through and praise you for sharing such a personal journey.

Leave a Comment

Your email address will not be published. Required fields are marked *