Dementia is a degenerative disease. It does not improve. One does not recover. The best we can hope for is to slow the current, as what was your life–your character, your habits, and your memories–slips over the falls at the end. But this is not a post about water. It’s a post about light.
In the summer of 2007, my dad was admitted to the hospital for internal bleeding caused by the deadly combination of diabetes and alcoholism. When they tried to treat his alcoholism, they found he couldn’t remember the next day what the counselor had discussed with him previously. Rehab was deemed unnecessary on the grounds that his dementia made it fruitless. It was the first we knew of the advanced state of his dementia. Mom had not wanted people to know, and she had not realized how serious it was. Old men get forgetful, now, don’t they? He had about a two-hour memory window, but couldn’t remember what had happened before—a flashlight with a two-hour battery.
I started researching dementia. For him and for me.
Two years later, that window had narrowed considerably. When I moved him in to an assisted living facility closer to me, I took him some books. I asked him if he wanted to read. No, it’s too tiring. I read aloud “Casey at the Bat” and “The Cremation of Sam McGee.” They are long poems, but poems we both knew well—poems he had read to me many times over the years. I thought he had five minutes in him, at least. He did not. He did not have a whole sentence in him. By the end of the sentence, he couldn’t remember what the beginning had said. He was confused, disheartened, frustrated, and tired. His mind was a matchlight that burned out almost immediately. I started wondering how long his light would last.
This is a question we’d considered in my youth while talking about photography. Photography is all about light—capturing light, manipulating light, diffusing light, redirecting light. When we went camping, we took pictures, and some of the best were taken in the ‘tweener times—the dawn and dusk hours where light was softer and often broken by shadows. This was a time when the color of flowers looked rich, not bleached, washed out by the midday sun. It was also the time of wildlife.
Deer are most active during these hours, more mobile, on the lookout for food and water they dare not seek during the bright light. The shadows keep them safer. The shadows also give them a texture, a depth, and the pictures taken during those hours convey a coziness and intimacy that is not attainable in full sun or in the darkness that follows dusk. It’s important, then, to shoot precisely during that window—after the sun has set but before the darkness obscures your vision completely. We shoot not frantically, but with purpose, and with intent to make the most of a fleeting opportunity, to take the best pictures we can in the best circumstances. Had I known this would become so comforting a metaphor for life, I would have paid more attention during those moments.
Sitting in his room in his retirement community, reading Robert Service aloud, I longed for epigrams instead of ballads. I sang him songs. Short songs, never the second verse. I wanted to give him cozy, comfortable memories, but distilled. I learned to speak in images: I bought a new car; the granddaughter lost a tooth; the roses are blooming. I brought in books of buildings and bridges, so we could look at them together (he was an architect). We looked at one picture, pointed out a favorite feature, and then put the book away. When words and images are illuminated in flashes, lasting only a moment, you learn to winnow the world down to beautiful seconds. If your whole life is one moment, with no connective tissue to others, you want to make each moment beautiful.
This is why dementia patients need caregivers (apart from the obvious, practical reasons). If someone is there, pointing out lovely things, life is lovely. If not, the odds that they’ll think of a lovely thing are long; they’re more likely to start and then become confused, as the darkness gathers in their mind. Those of us without dementia benefit from perspective; we see things in a panorama or a film, with scenes succeeding scenes. Our current scenes have a past, a trajectory we can see, and a future we can sometimes predict. And all this cycling through days and nights and dawns and dusks serves us best when it reminds us to take the best shots we can while the light lasts.