Snapshots of Dementia: What I Wish I’d Known
What is something that you wish you’d have known early on, or wished you’d have done or put in place?
A woman whose husband is newly diagnosed with young-onset dementia, early stage, asked this question of other spouses/caregivers, and it moved me to think—and now, to write.
That’s part of the reason behind my blog, I thought. But her question also prompted some specific responses.
1. I wish I’d known more about dementia early on so I could have pushed sooner and harder for a diagnosis. No (because some of you will think this), I’m not beating myself up. You can only know what you know. But if I had understood sooner that dementia encompasses much more than memory problems, and especially that it can have various effects even while the affected individual still performs well on standard cognitive tests, I wouldn’t have accepted the “No, he doesn’t have dementia. Come back in a year” responses that I heard for more than two years.
2. I wish I’d known that dementia would change more than Tom’s mind and memory. Even before he was diagnosed, I noticed that he had lost his sense of smell, although I didn’t know that was a common symptom of dementia (no, not just of COVID-19). I noticed some obsessive behaviors. I noticed him having increasing trouble finishing tasks he started. I noticed him withdrawing from family and failing to initiate conversations. And I noticed a whole host of other problems, many of which I’ve written about on this blog, that I never knew had a thing to do with dementia—but they did, and they do.
3. I wish I’d known the true value of narrative. Although I make my living from story, I dismissed its worth. Neurologists and others want and need objective ways to measure symptoms and determine diagnoses, and I understand that. But I also believe strongly that they must consider reports from the individual and (because many people living with dementia, or LWD, often have, as Tom did, anosognosia, a lack of awareness of their symptoms) from those closest to them.
Early on, the most supportive doctors we had were the ones who listened and took notes on what I reported. The least supportive were those who dismissed my concerns because the objective testing did not at the time support our subjective experience. And yes, the objective matches the subjective now. But why did we, and why do so many others, have to wait until their loved one is midstage in the disease before medical personnel will agree that there’s a serious problem?
4. I wish I’d known how many others were trapped in the same sea of uncertainty as we were. Since beginning this blog, I’ve had many people comment publicly and write me privately to tell me of their similar experiences. I write not out of some deep inner desire to spill my (or my husband’s) stuff or, in effect, to share the bad news. If what I share can help even one person move one step closer to asking the next question or making the next appointment or doing the next right thing, the time and words I share are worth it. And I’m grateful that God has shown me, again and again, that these words do make a difference.
“I hate dementia.” That’s what Tom tells me when he makes what, in the past, would have seemed like a silly mistake. That’s what he says when he notices me solving a problem he couldn’t or cleaning up a mess he didn’t realize he’d made. Although I periodically remind him of the existence of this blog, he’s never asked to read it, and I doubt he will. But what he would say if he could is that he hates dementia for other people too. You matter to God, so you matter to us. And he and I are both grateful for the opportunity—even through the sharing of a mixed-up, often messed-up story—to make a difference.
If you’re caring for someone who is LWD, what do you wish you had known early on? What would have helped you then, or what might help you now? Feel free to share your response in the comments below or on social media. Our story matters, and so does yours.
