"What do we do now?"

I hear these words every time I drive my mother-in-law Connie somewhere and I put the car into park. I say, "Connie, it's time to get out of the car." Connie then sighs and says, "I will follow thee. Wither thou goest, I will go."

When I loosen her seatbelt, she acts surprised, like I just poked her in the ribs. Her hands fly up in a startle reflex.

Connie has Alzheimer's.

I didn't plan on this. I imagined my children's cherished grandmother alert and adorable at their graduations and weddings. Yet Connie, 84, has had dementia for several years now. Because we are the closest relatives, my wife and I have the main responsibility for her care.

I'd like to proclaim I've learned Great Truths along the way, but the best I can say is that I'm learning — or trying to learn. Mostly, I'm trying to be patient. Sometimes I can feel the wrinkles coming on, the accelerated aging that comes with caring for the aged. One thing I now realize is that many, many people know at least one person who has or has had Alzheimer's, a spouse, a parent, a grandparent. And, as health care improves, that percentage is going to go up. It's not something to look forward to.

At this point in the journey, I have a few reflections, some of which are expressed in the following poem I wrote recently.

Dementia Road

My mother-in-law is accidentally
driving us beyond the street called
Seeds of Sanity Avenue.

It's tough enough to wind down
these lombardian, obstacled roads
at our best. But now, with Connie

at the wheel, we're reeling, banging
against the armrests, grasping
for seatbelts or any tightening thing. We're afraid

we'll fly out. We feel that one more
turn and the wheels will come off,
the axles grinding through the asphalt

like cartoon plows. And why? She planted and
watered well over the years, and now this harvest
of careening loss is what we reap.

She used to drive with both hands and cautious
eyes, as predictable as potatoes,
and we know that even now she will eventually

run out of gas. But so will we
— and we wonder, whose emptiness
will find the narrow shoulder first?

Uplifting, eh? Yet this is how we have felt at times: out of control, utterly spent, and worried that God's providence has too many cracks to patch up. These themes direct me to my first point: It's important to tell the truth about loss. We need to tell the truth about the person with dementia. This is harder than it sounds because it's so tempting to live in denial. "Grandma is simply forgetful like other 80-year-olds." "Grandpa is not really less rational; he just needs a little help." Sometimes Christians feel they should always "be uplifting," but Frederick Buechner reminds us that "telling the tragic truth" is important. He says we need to "obey the sadness of the times."

The truth is that watching Alzheimer's overtake someone hurts. It is tragic to observe the losses of memory and logic, of politeness and optimism and pleasant emotions. When we don't tell the truth, we might spend our energies shoring up the lies we are telling. And we might not take the steps that need to be taken to get good medical care or personal assistance. If we pretend that gradual decline is not inevitable, we may avoid the necessary preparation for the financial and residential changes around the bend.

We also need to tell the truth about the effects on ourselves. Being with Connie is a little like dealing with a toddler. We need to be patient, firm, and positive. We have to remind her to put on her happy face. But the difference is that parents approach a toddler with hope, hope that things will gradually get better, that maturity is right around the next birthday. With Connie, we have no such hope, exactly the opposite in fact. Since she has a terminal disease, we place our hope in Christ, and we thank him for his promise that there is a place prepared for Connie in heaven. Until then, her body and mind will continue to deteriorate. We can count on it.

So, we have to face her mortality and, through hers, our own. This can be more helpful than it sounds. Our culture does everything possible to keep us from remembering that everybody dies. Maybe we could profit from thinking about and preparing for our own death. Memento mori. Sound morbid? That just goes to show how much our culture has removed the contemplation of death from our view.

And then there's the time-effect. Caring for Connie takes hours per week, even though she's in a local residence. Beyond visits with her, there are her bills, medications, doctor's visits, and negotiations with the staff at the residence. We could easily develop a martyr-complex or just work ourselves silly. We need to avoid the guilt that tells us that whatever we're doing, we should be doing more. If we collapse, who will hold up Connie?

My second point is that it's important to appreciate humor when it reveals itself. Although not every Alzheimer's patient says "precious" little phrases, Connie does. She calls the refrigerator "the reefer." When she walks away from us, she says, "I shall return, me and Macarthur."

I suppose some might say we are mocking her. Perhaps. But each smile is also full of love, like the way we humbly laugh at ourselves when we do something silly. In some sense, we are laughing at the person the disease has turned her into, which is not the sweet "dear-heart" who came to all of our daughters' school events.

In a way, you could say we are laughing at death (not an unhealthy practice), or what the beginnings of death have done to her. For example, she talks constantly, reading off the names of all the streets and signs we drive by. She often says, "Okay, I'll shush," which I call the least kept promise in America. We need to laugh for our own health. I suspect God laughs plenty at our foibles!

My third point is that it's important to keep on loving. Of course, you say, what else? Although we've never seriously thought, "let's be less loving," we do face a rather odd temptation. Connie won't remember what we don't do for her, if we skip a visit or ignore her in conversation, so does it really matter?

Into this temptation comes the stunning truth that "while we were still sinners, Christ died for us" (Romans 5:8). For the most part, Connie does not know half of what we and her other children do for her. She has forgotten about her taxes. She doesn't know about the work we did to her house. But we love her anyway, just the way we were and are loved by God, no matter what we do, no matter how far we drift from "normal." God does not love us because we deserve it; it is grace. And we can imitate his love.

Finally, it's important to "listen as one being taught" (Isa. 50:4). The Lord has a lot to teach us through Connie. Amazingly, her faith, though simpler, grows ever fervent and demonstrative. On a walk, she'll exclaim, "Thank you, Jesus, for the clouds and the flowers and for this precious family of mine." At church, no matter what Scripture is being read, she'll say (loudly), "I just read this passage this morning. Oh, thank you God for your Word." She prays table grace with more sincerity than the most verbose of preachers. We smile when she prays, smiles that catch us up into her intimacy with Christ. George MacDonald says that as we grow older, we become more like children so that we will be ready to enter the company of our Lord. My faith is not yet as pure or generous as Connie's. Thank you Jesus for Connie's simple faith!

My own receptivity extends beyond what Connie can teach me; I'm also sitting at the feet of my wife, Janet. During this season, I've found myself thinking, selfishly, "Lord, may I decline before she does, so that I too can be cared for with her persevering, cheerful presence. If she fades before I do, how will I endure? Why should she suffer my undeveloped grace, my immature humility?" How dark a heart that thinks so selfishly, a darkness, perhaps, that I wouldn't be aware of were I not dealing with my mother's dementia. Much can be gained if we see our circumstances as part of the teaching ministry of the Holy Spirit.

And sometimes we feel empty. Sometimes we feel we can't take another day. But as we age along with the aged, we do not travel alone. Truly our Lord is beside us. He is beside Connie too. We can't always see him helping her, but we trust him. And that is enough.