Just the Facts, Please

The only way to look at Alzheimer’s Disease is straight on. Unblinking.

Face reality.

Not easy. Especially in the beginning, the disease lures us into false visions. The good days look just fine. “Normal.”  Difficult times? It’s easy to tell ourselves they’re caused by a misunderstanding of some kind, or the aches and pains of getting older.

realityBut the illusions last only so long—would that we could predict exactly how long!—before we can no longer ignore the reality of decline. At that point, we begin to feel as though we’re flying by the seat of our pants. Barely managing to keep the lifeboat afloat. Walking a tightrope in the dark…without a net. We navigate by instinct, bail as fast as we can, and slide ourselves across the chasm with a bravado born of blindness—the darkness hiding not only what lies below but also what looms ahead.

We hunger for information. Information is power; power gives us some level of control; and we long to gain control. But Alzheimer’s doesn’t come with a navigation system or weather forecasting or safety nets. There is no uniform set of symptoms, no universal timeline, no advance notice of sudden changes. Pinning down the facts, just the facts—the who, what, when, where, and why—of Alzheimer’s is a seemingly impossible task.

any questions First we look to science: What signs should we look for? Any treatments on the horizon? Any cures?

But eventually—and always too quickly—we’re just searching for ways to get through each day. We want to know more about how to help our loved ones feel safe, stay connected, and live at their best—today. Here, definitive answers are even harder to come by, because the challenges of living with Alzheimer’s are unique to each personas unique as his or her personality and experiences.

factIs there no answer then to the question of when to take away the car keys? No answer to what does sundowning look like or how to handle wandering? Well, if we look at Alzheimer’s and caregiving factually, no, there is no one answer to those questions.

Realistically speaking, though,  we know there ARE answers. There are helps. Some we’ve seen. Some we’ve read about. THE answer for everyone? No. But options, YES! Looking realistically means letting go of the idea that there’s only one right answer to each question. Looking realistically means we can look at the WHOs instead of the WHO; the WHATs instead of the WHAT; the WHENs and WHEREs and WHYs instead of expecting a single, uniquely correct, factual response to our questions.

And looking realistically means that even though none of us has all the facts, we can share the information we do have.Hands raisedOur next five posts on this blog will do just that. We’ll explore each of those five issues: the WHOs, WHATs, WHENs, WHEREs, and WHYs of Alzheimer’s. We’ll be looking at each of the topics subjectively, dealing not with statistics but with common experiences. So we can learn and share.

optionsMany questions and many answers make for many options.

Caring for a loved one with Alzheimer’s is a generous and loving but demanding and strenuous challenge. That’s a fact. But it’s also a fact that we need not face that challenge alone.

“Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you.” Matthew 7:7 (NKJV)

Lord, You are the source of our hope and our help. Please remind us that we belong to an army of caregivers, each of us fighting the same battle, all of us searching for the same answers. Help us help others as You help us all.

Making Assumptions

Making assumptions can be a good strategy for caregivers. Why? Because making an assumption will lead us to try something, take some kind of action that just might improve life for the ones we care for.

So many times in a day I was baffled by my mother’s actions. Or her words. Or the expression on her face. I could try to guess what she needed or wanted and come up with a lot of possibilities. But then I spent time trying to decide which possibility was the correct one. And as the clock ticked on, Mom either got upset because I wasn’t helping her, or she said—by word or action—“Never mind. Just forget it.”

meme-thinking-face-1920x1080My guessing game left us both unhappy.

But what if I had assumed? “Assume” carries the idea, not simply of guessing, but of acting on a guess. And where our loved ones who have Alzheimer’s are concerned, trying to do something for them is almost always better than standing around worrying about what they want.

good ideaA simple example:
Dad, Mom, and I walk into a large discount store. She’s pushing a shopping cart and I’m right beside her. Dad goes ahead of us with his own cart.

Usually Mom and I sit for a while in the coffee shop while Dad roams the store. So I gently steer the cart toward our regular table. Mom gives me an angry look. Asking her what’s wrong gets me no response. So I try again to turn the cart. This time Mom hisses, “No!” Before her temper is fully engaged, I stop to investigate. Her shoe isn’t untied. She’s not trying to sit down. Her hands aren’t in her pocket searching for a tissue. She’s just staring straight ahead. So I look that direction—and see a large display of poinsettias. They’ve arrived just in time for Thanksgiving.

And I assume that’s what Mom wants to see. Rather than ask her, I simply steer the cart in the direction of the flowers.time for action

The closer we get, the bigger Mom’s smile grows. We walk around and around the large display, circling the blooms of red and pink and green and cream, some glitter-sprinkled, and all stretching their graceful necks above gold and silver foil collars.

After Mom’s admired and sniffed and pointed for a few minutes, I see her shoulders start to droop and assume she’s getting tired. So I start talking about our favorite table and the hot coffee we can enjoy there. And soon we’re there, sipping our coffee, Mom pointing toward the flowers again, me talking about each color, the three sizes of pots, and gold and silver ribbons.

I could have asked, of course. “Mama, do you want to see the flowers?” In the absence of a reply, I’d likely have gone on, “Or do you want to look at the popcorn tins? Or walk down the produce aisle? Or go find Daddy? Or….”

pls stand byBut on that day as on most days, Mom either couldn’t or wouldn’t have answered. The frown on her face would grow deeper with each question. So, knowing that almost any pleasant action is better than another question, I made an assumption and started moving. If I had found my assumption was false, I could have made a different one and moved in a different direction.

There are, of course, two other possibilities to consider:

Maybe Mom didn’t know what she wanted; maybe her reactions had more to do with a difficult mood than a specific desire. In that case, steering with my shoulder and my body, I’d have led her over to sit down or outside to wait in the car.

Or perhaps I had no idea what Mom wanted to do. What then? Well, I could still try all the likeliest possibilities, and sooner or later the activity would tire her and we’d just sit and wait for Dad.

The thing to remember is that making an assumption leads to some kind of action. For the caregiver, doing something feels better than standing around wondering. And for those with Alzheimer’s, our actions, even trial-and-error actions, are easier than questions. Even if what we end up doing isn’t what our loved ones had in mind, all our attention is focused on them. We’re touching them, talking to them, smiling at them. In Mom’s case, all of those gentle realities were less threatening to her than a question she couldn’t answer.

forwardFor me, doing something was progress. Finding out Mom would eat cranberries when nothing else pleased her, seeing that sometimes she wanted me to help with the left shoe first instead of the right—making discoveries like those helped me to see that I wasn’t just watching and waiting with her. I was helping her live a life, her life, in spite of Alzheimer’s.

He will feed His flock like a shepherd; He will gather the lambs with His arm, And carry them in His bosom…. Isaiah 40:11 (NKJV)

Lord, we ask you to guide our actions with our loved ones. Show us the possibilities, the opportunities we have to help them continue to live here on earth until You show them the infinite beauty of life with You.
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