Alzheimer's - the Long and Winding Road

Imagine you’re on a nice, wide boulevard. There are lots of exciting things to do and see as you drive along. Then the road begins to narrow, and the shoulders drop o­ff, and things along the roadside are a little less enticing. As you continue you find yourself on a gravel road with hardly anything of interest on each side, and what’s there is shadowy and spooky. Sharp curves, potholes, ruts and bumps make you afraid to take your eyes o­ff the road. Then, suddenly, you’re off­ road with no idea of where you’re supposed to go, no signs, just emptiness.

You’ve just traveled the Alzheimer’s Highway.

It can hit just when life is at its most carefree. Your children are grown and out of the house, you may have grandchildren to enjoy, and you can go where you want and do what you want. Sometimes you begin to notice numbers, which you’ve always been good with, refuse to add up. You can’t write without a dictionary handy. Words on the tip of your tongue refuse to go any further. You make an appointment with your doctor and can’t decide if you’re afraid or relieved when he says it might be mini-strokes or something similar, and you need medication. The medicine has side eff­ects, and in an eff­ort to find a diff­erent treatment, they come up with a new diagnosis: Alzheimer’s.

This is what happened to my father.

In the beginning, it was easy for us to rationalize: “At least it’s not terminal cancer. You look pretty good. You can still do almost everything you used to.” We told him he seemed fine, but he knew better. He knew things weren’t the same, and never would be. He began to worry about his wife and what it would mean to her. He couldn’t keep his “after retirement” job, because he no longer had the skills he needed. For years, it was hard to tell there was anything wrong. After all, everyone has trouble finding the right word sometimes, or calls someone by the wrong name, or can’t remember what they went to the store for. But it got worse.

Now with Stage Two Alzheimer’s, he’s found himself off­ the blacktop and on the gravel road. Sudden bouts of anxiety strike when he least expects them. His emotions don’t always suit the occasion. From tears to tantrums, neither he nor his loved ones know what to expect. It’s not all the time. It’s not even most of the time. But each time it happens, he worries just a little more.

His self-confidence has dropped. He walks away without finishing projects and doesn’t even know it. When there’s a lot of conversation going on he withdraws because he’s not sure what everyone is talking about. Sometimes when he joins the conversation what he says isn’t what he means. People come up to him and act like they know him very well but he can’t remember who they are. He’s beginning to feel less physically capable and has trouble sleeping. He clings to the familiar: his wife, close family and friends. He suff­ers from paranoia, often directed at those he needs the most.

Sound like a horror movie? It is, for those who are living it.

Medication can slow the progress, and su­fferers quite often go for many years without getting sick enough for casual observers to really notice. That’s one of the worst parts of the disease. Those who have it can feel the changes, but it’s like being on the inside of a mirror: You can see everyone, but they can’t really see you.

At some point my father's gravel road might turn into the trackless wilderness that leaves him unable to fend for himself. But in the meantime he’s taking steps to keep the most severe symptoms at bay. He saw his doctor as soon as he thought there might be a problem. He wasn’t too afraid to fi­nd out; after all, it could have been something else. And even though it was Alzheimer’s, medications have signifi­cantly slowed the progression. He knows research is ongoing and there will be more drugs and treatments.

He stays abreast of new breakthroughs and has no intention of giving in to the symptoms without a fi­ght. He plays word games and does crossword puzzles, anything that exercises his brain and helps push back at the disease. Even though it’s one of the hardest things to do he continues to interact socially, knowing the mental stimulation of conversation and activity gives his brain a boost. Because tests have shown that poor diet and lack of activity increase chances of Alzheimer’s he eats a healthy diet heavy on vegetables and fruits, and low on saturated fats, and gets as much exercise as he can.

He’s kept his sense of humor, ­finding it the best, and cheapest, weapon against the disease. He tells us these awfully funny (and I mean awful!) stories about the unexpected costs of the disease. Like walking to the mailbox, arriving home with the mail, but no keys. Back to the mailbox to fi­nd all his keys gone, including the special electronic car key that cost $400 to replace. And the time he was working on his motor home and ended up with a spare part. It didn’t seem to go anywhere and he ­figured it wasn’t too important. But he found out differently when his steering came apart a few hundred yards up the road. Even that wouldn’t have been so bad but a Good Samaritan stopped to help and ended up breaking a $200 part!

He knows Alzheimer’s isn’t a laughing matter, but he’s still managing to keep his wheels out of the ditch. With family and friends providing roadside assistance, he’s looking forward to a lot of good miles ahead of him.