Snapshots of Dementia: ‘But He Seems So Normal’
“But he seems so normal.” “I can’t even tell there’s anything wrong.” “He’s still so funny!’ “Are you sure?”
I’ve heard all of these statements and more in our journey to and beyond Tom’s diagnosis with early-onset dementia (in his case, frontotemporal degeneration, or FTD).
I don’t blame anyone for saying these things. Tom looks normal. He can still carry on a conversation. He still dresses, bathes and feeds himself (granted, he needs lots of reminders these days.) He still has his trademark sense of humor. In other words, he’s still very much Tom.
And yet as I’ve shared, his dementia has stolen so much of his life. He can no longer hold down a job, drive or manage finances. Other than a few simple songs, he can no longer play his beloved trumpet. He has trouble making even the simplest of decisions. And the online golf game he loves? I’ve had to not-so-jokingly ban him from calling himself “stupid” or “moron” the many times he fails to make a shot.
And as I’ve also shared, Tom has made other “terrible, horrible, no-good, very bad” decisions that have hurt himself and our family. For a season, he withdrew in large part from his relationships with me and with our children. Although he has declined in his cognitive ability in multiple ways, few are immediately obvious. His short-term memory seems to get shorter all the time. On average, he “loses” objects at least five times a day, often convinced they are gone forever and amazed when I easily find them. His appetite for sweets, always strong, has become voracious, and before a recent surgery, his obsession with walking (something he rarely wanted to do prior to this year) had increased so much that we were walking anywhere between 14,000-18,000 steps a day (yes, I’m thankful that so far, the last two seem to balance each other out!).
And yet no one who saw him for a few minutes or even a couple of hours would know any of this (unless, of course, they’d been reading these posts). So yes: “He seems so normal.” And before my experience with Tom’s dementia, I know I looked at other dementia patients and thought the same thing. Oh, the disease must not be as bad as they thought. She seems so normal.
Dementia is like many other disabilities in that it often remains hidden. Some of you have praised my transparency now. But in the three-plus years it took us to obtain a diagnosis, I kept very quiet. I shared my concerns with a tiny handful of close friends and our children. After all, the doctors kept saying he was fine. And even to me, Tom seemed (you guessed it) so normal.
Except when he didn’t. I can’t describe or count the number of times I asked God to show me if he really had a problem because he had a good day or performed a task I wasn’t sure a person with dementia could do—only to have him act out a “good idea” like pouring the gasoline down the sink or becoming agitated because he couldn’t have what he wanted right when he wanted it.
Although there is very little normal about dementia, the tangles in the brain that I described earlier (turns out these are an actual, physical issue) can allow the dementia patient to appear, for a short time, as if nothing is wrong.
And that’s another key: For a short time. Tom’s disease (and some other types of dementia as well) also allows him to go into what I call “presentation mode” when others are around. He used to do this at the neurologist’s office and charm the staff every time. Once, a medical assistant gave him a higher score on a cognitive test than he had earned only because of his joking ways. But after the “short time” is over, he has nothing left.
Before COVID-19, Tom and I were part of a senior adult choir that had a nursing home ministry. Tom could sing with the other seniors, interact with the nursing home residents (although he usually let me take the lead) and converse with our choir friends at lunch. But afterwards, when we came home, he talked little and slept for much of the afternoon. The mental energy devoted to even a couple hours of social interaction wipes him out every time.
If you see a friend or family member who has dementia and “seems normal,” please know you see only a small picture of what’s really there. Just as we can’t make judgments, good or bad, about our friends by what they post on social media, we can’t make judgments about someone with dementia (or suspected dementia) by the way they appear at any one time.
We can love them and listen to them. But they may have a very skewed view of their own disabilities (as does Tom). And we can love and listen to their caregivers.
Because their stories matter. And so do they.
If you have a friend or loved one with dementia, have you noticed “presentation mode”? Do they act differently in public than at home? What recent changes have you noticed? Feel free to share in the comments below. Your story matters.