Snapshots of Dementia: 7 Facts I Wish I’d Known (Before I Learned by Living)

Posted by Marti on October 14, 2020 in Dementia | 8 comments

Much of what I’ve shared in these snapshots of dementia so far has a connection to my own ignorance. Of course, you don’t know what you don’t know. So while I don’t blame myself for what I didn’t understand, I sometimes wish I could have a do-over—for Tom’s sake and for my own as well as our family and friends.

If a do-over were somehow possible, here are a few of the things I wish I’d known earlier on.

1. Dementia is not a natural consequence of aging. Because one of my grandfathers showed signs of dementia in his 80s and people said, “That’s what happens when you get old,” I honestly thought his age was the primary factor (even though nothing like this happened to my other grandparents, who all lived into their 80s or 90s). I wish  I had known more about Grandpa’s problem and even tried to help him more. I think what I saw in him contributed to my misperception (which, I have learned, is common).

2. Dementia is not one but many diseases. Like most people, I’d heard of Alzheimer’s. I knew a little about Parkinson’s Disease, which has related dementia. But I certainly didn’t know about the wide range of dementia disorders, symptoms and problems that exist. Some of the most common in addition to Alzheimer’s include Lewy Body Dementia, vascular dementia and the type my husband has: frontotemporal degeneration or FTD.

3. All dementias are not created equal. This is a corollary to No. 2, because each disease has its own characteristics and qualities. Because Tom’s dementia is still classified as rare (rare enough that many neurologists and other medical professionals seem to have little knowledge of it), I write partly to inform others. I had no idea, for example, that dementia could cause drastic shifts in behavior, personality and ability even at a fairly young age (many FTD patients are much younger than Tom, who, I now believe has shown symptoms for some time). I didn’t know, and as you may have read in the blog, neither did most of our doctors, apparently.

4. Dementia involves more than just memory loss. As explained above, dementias vary from type to type. They can also vary significantly from person to person. Pre-diagnosis, my main perception of dementia was that people who had it grew older, forgot things and became confused. I did not, however, realize that dementia symptoms could include things like loss of the sense of smell (no, this is not the COVID-19 temporary loss); a slowing down in overall thinking; obsessive-compulsive behavior; swallowing issues; apathy and withdrawal from social relationships; language loss and so much more (these are all symptoms Tom has, but they are not the only or even his only symptoms). Some patients don’t show memory loss until they are quite far along into their disease. So why is that the major symptom we associate with dementia?

5. Dementia is a terminal disease. I remember how shocked I was the day I read that FTD will one day kill my husband. Of course, like anyone else, he could die from a number of other causes. But I never understood that the normal course of dementia means that the brain will continue to lose function, which will result in his death. This makes perfect sense, since the brain is in charge of so much of what happens consciously and subconsciously, but I had never considered it before. It’s yet one more reason I can honestly say I hate this disease. It’s stolen so much from my husband. And ultimately, it will steal his life.

6. A person’s a person, no matter how deep his dementia (Ps. 139:13-16). As a believer in Christ, I’m sure I would have affirmed this truth. However, the way I thought of people with dementia showed my internal disagreement: They weren’t normal. They were somehow deficient. I see now that my husband is still present; he’s just a person who has a disease. We wouldn’t treat him as “less than” if he had cancer or diabetes or some other physical problem, and we shouldn’t treat him (or anyone) as “less than” because he has dementia, either. I’m still training myself to give him as much dignity as I can and, even though I do share my moments of frustration with trusted others, I want to keep my conversation to and about him as positive as I can. As a person made in the image of God, his worth is immeasurable, and dementia can never do anything to change that.

7. Dementia touches multiple people. I find myself having to explain Tom’s disease to everyone from the man who takes care of our lawn to our local library clerks to our pest control technician because its effects manifest themselves in ways that impact them and their work. I even have business cards to share (once we can go out in public places again) that give a brief summary of his disease and ask people to “please be patient.” But beyond these casual acquaintances, dementia has gripped our family. It’s changed what Tom and I thought was our future (finishing his career as a pastor and moving into retirement when we chose, not via a sudden job termination at age 62). It’s changed our children’s lives (in addition to their concern for their dad, they’ve all made sacrifices that include helping us move, taking care of and ultimately adopting our dog, checking on us, shopping for us and more). Dementia, as our oldest daughter has shared, means her little boy will never know his Grandpa Pieper as an extroverted, fun-loving pastor and professional trumpet player. He knows and loves him as he is, but he’s never seen the full person, the real Grandpa. Dementia stole that before this precious child was ever born.

What have you learned about dementia, by experience or education, that you wish you’d learned sooner? I know I still have a lot to learn, and this list is by no means exhaustive. I’d love to hear your thoughts in the comments below. Thank you for reading and sharing. Your story matters, and so do you.