Dementia, Part 1: What Caring for My Mother Taught Me

Dealing with the debilitating effects of dementia on my mother over the years before her death was difficult to say the least. But it taught me some important lessons.

Dementia is an unfortunate condition in which the brain no longer functions properly. Those who suffer from it often cannot remember what they did five minutes ago, but may remember something that happened 50 years ago as vividly as if it were yesterday. However, they may also have false memories (the thing they say happened at a picnic 50 years ago cannot be corroborated by people who were present at the same picnic). And they may also no longer recognize people they have known their whole lives, such as a close family member or dear friend.

Millions of people around the world suffer from dementia. My mother was one of them.

It is said that dementia is progressive, meaning it gets worse over time. Various medications have been developed to try to delay progression. Whether they work or not is a matter of debate. Some say yes; some say no. All have side effects.

Peaks and valleys

My family witnessed dementia in my mother not as a slow, steady decline, but rather a decline characterized by peaks and valleys. One minute my mother would be perfectly rational, even making insightful suggestions.

In one memorable case, while we were talking about our Feast plans, my mother piped up, “Be sure you have the mail delivery stopped.” Where that came from, I’ll never know, because we hadn’t done that often over the years, instead usually opting to have someone collect the mail for us. But for some reason, she remembered that and brought it up—which was actually helpful, because all of us had forgotten it!

Ten minutes later, however, she might not have been able to find her way to the pantry, although she had lived with us for the last seven years.

Fascinating and frustrating disease

And so it goes—the fascinating, frustrating, infuriating disease known as dementia. Sometimes (too few times) you laugh and roll with the punches. Sometimes you get angry—you can feel the pulse beat in your ears. And sometimes you cry.

Always, you try to be patient. You keep telling yourself that your loved one can’t help it—it’s a disease. You keep telling yourself that to try to convince him or her that there isn’t a little black dog sitting under the kitchen table is futile, so you should just smile and say “How cute!” without commenting on its veracity.

You keep trying to organize things so that they are successful in daily living skills. You lay their clothes out in the order in which they are going to put them on. Or you cue them for the thousandth time that they have to take off their sneakers before taking off their pants because the pant leg won’t fit over the sneakers, but they will still struggle, trying to take the sweatpants off over their sneakers. You may set the shoes down with the right shoe by the right foot and the left shoe by the left foot, but they will still try to put the left shoe on the right foot and the right shoe on the left foot (without your noticing). Or they’ll put on two shoes with different height heels—and then spend the whole day walking around with the wrong shoes (without their noticing).

The secret

You will spend hours—thinking while driving or as you fall asleep at night—trying to come up with solutions to these problems. They are practical problems, you think. Surely there is a way to make things go more smoothly and efficiently. And many times, that is correct.

But a flash of spiritual insight came to me on one of my long commutes home from work: “My mother is not a problem to be solved. She is a person to be loved.”

And that really is the secret: seeing the person with dementia as a child of God—even when he or she does the most illogical, dangerous or frustrating things. Because in many ways, all humanity suffers from spiritual dementia.

I’ve spent hours thinking about this analogy, and in Part 2 I’ll share some spiritual insights.