The Things We Do

The things we caregivers do…sometimes they don’t make a bit of sense!

Or do they?

piecesThe other day, looking through the closet where I stash new toys for my grandchildren, I came across some puzzles stacked in a corner on a high shelf. I didn’t remember them at first.

I opened one box and touched the odd shapes of cardboard; clearly the puzzle had never been worked. The edges of each piece were still crisp, not rounded or soft as they would be if my grandchildren had squeezed them into the right—or wrong—places. There were three boxes, each with the same “new” look.

turtleCool! I thought. Must have gotten these a while back and then forgotten them. Clearly they were for children: large pieces; cute pictures of animals; bright, primary colors. The turtle had 4 pieces; the teddy bear picnic, 15; the kitten on the fence, 30. Good! They must have been intended for three different age levels; that would mean years of entertainment.

That thought led to a discovery; the discovery triggered my memory. Looking for the age designations on the boxes, I found instead a neatly cut hole on the side of each lid. I frowned with irritation—who would so intentionally remove that information? Then I remembered: me. I removed it right after I purchased the puzzles.

teddy bearsBack when Alzheimer’s still allowed Mom some good days, I was always looking for activities that would keep her challenged and entertained. The activity had to balance on a thin line: too difficult and Mom would get exasperated and angry; too easy and she’d be insulted and angry.

Somehow I came up with the idea of children’s puzzles. I could get several, each for a different age level. That way I was sure to find one she could do and enjoy. It seemed like a great idea.

Until I envisioned putting the puzzles in front of Mom. What if she noticed the “Ages 4-7” label on the side of the teddy bear picnic box? Or “6-10” on the kitten or “2+” on the turtle box? Surely she’d be confused, even hurt. The thought of her looking at the numbers and seeing I had chosen children’s puzzles for her almost brought me to tears. So I carefully cut away the offending section of each box top.

kitten on fenceAs I recall, when I brought out the puzzles, Mom scarcely looked at them. I’m sure I called her attention to the animal pictures and started putting some of the pieces together. But Mom wasn’t interested. She ignored the bright boxes, and me. I guess I hadn’t chosen the right day to give them to her. And, apparently, the right day never came along.

At times like those, I had learned not to take Mom’s actions personally. A hard lesson, for every caregiver, but an extremely important one. Alzheimer’s and other types of dementia rob those we care for of the ability to consider a situation or a person or an event and decide how they should react. The disease can be as cruel to family and caregivers as it is to its victims. So gradually we must adjust, accepting that it’s the disease acting, not the person we’re caring for.

But what struck me last week when I found the puzzles wasn’t disappointment that Mom never got to enjoy them. Instead, I wondered what on earth I was thinking when I worried about words on the side of a puzzle box! Worried about them to the extent that I cut them off very carefully, hoping that straight lines and un-frayed edges would disguise the holes in the lids.hole in puzzleWhat was I thinking??? So much worry over something so silly!

Looking back, seeing how desperate I was to protect Mom when she was already so far away, has left me with a hangover of sadness. Since then, I’ve struggled to enter that ache, and name it. I know if I can name my pain, I can take it apart, see it for what it truly is, and use it for something good.

So I’ve thought a lot about those neatly cut holes.

Why? Why? Why? If I really believed I was protecting Mom, it was protection she didn’t need. She didn’t read anymore, and even if she did, she was long past being able to understand the concept of age levels.

But…

I understood that concept. And it pained me to hand a teddy bear puzzle made for 5 year olds to my beautiful, talented mother. So I removed the evidence of her decline. For myself. For my father. And I did it carefully, with great precision. In contrast to the crooked and wandering trajectory of our days, I cut out the painful words with straight, controlled strokes. The edges were clean, not messy and frayed like our lives and our hearts.

heart peopleNo, I didn’t see back then that my motivation for removing the labels was anything other than shielding Mom from possible confusion or hurt. But I knew taking that action made me feel better.

And now I know why.

As a caregiver, are you ever tempted to call some of your words or actions “silly”? Look carefully first. Or better still, just give yourself the benefit of the doubt. If those seemingly pointless activities make you feel better or safer or happier, then they are important. They make sense.

mended heartTrust yourself. The same intuition and instincts that make you a good caregiver for someone else will help you take care of you.

How many are your works, LORD! In wisdom you made them all; the earth is full of your creatures….All creatures look to you….when you open your hand, they are satisfied with good things. (Ps. 104:24, 28 NIV)

We need You, Father, every day. In every circumstance, we need Your guidance. Show us what our loved ones need, and open our eyes to our own needs also. Thank You for Your care for all of us.

The High Places

You’re going on a journey through Alzheimer’s. Or rather, you’re helping a loved one navigate the journey. No one recommended this trek to you; in fact, people tell you they’re sorry you and your loved one have to make the trip. But here you are.IMG_2394

As you start out, the terrain looks tough but not impossible. The trail is faint, though, and you wish you had a map. You tried to purchase one, but people told you maps of this territory are sketchy at best. It’s a different trip, they say, for everyone who makes it. So you pray for guidance and start walking.

In the beginning, things go relatively well. Your loved one moves slowly, but the two of you talk about what you see around you. You have plenty of food and water and stop now and then to refresh yourselves.

Before long, though, you find the stops are more frequent and they last longer. The trail is getting narrower, brushier, rockier. For your loved one, it’s slow going. So you extend your hand to steady her, and you pray it gets easier. It doesn’t, but you have to keep moving forward.

IMG_2406As you walk, the truth slowly dawns: this land is wild, but it has its own beauty. You listen and hear birds singing. Your loved one stops and smiles as one flits across your path. You point up at the sky and she lifts her face, admiring, you hope, the colors of the layered clouds: off-white, light gray, dark gray. Only clouds overhead, but they’re easy on her eyes and she stares so long, she sways a little and you take her arm.

The trail continues upward. It’s easier to see it now as it runs alongside a little stream. Tripping lightly down from the heights you’re trying to reach, the water sings as it goes. You wish you felt like singing, but your own breath is running short and your loved one stops again, and again, and again. You find logs for her to sit on, or rocks.

IMG_2393You sit beside her; you breathe together. It’s hard in this thin air, harder for her than for you. But looking around, you see that life has been hard up here. The old skeletons, deformed and bent, wounded by the work of living, litter the landscape with broken white  bones.

Yet, even with the steep incline that makes traveling across it so difficult, the land has rewards for those willing to search for its beauty. Wildflowers wave on tall stems or cuddle against tree trunks or stretch fragile roots toward the streams. Some thrive in the austerity of a boulder field. All become more diminutive as the trail climbs higher.

IMG_2434It’s a gift, you understand, this ability to keep your eyes open to the magnificence of small, beautiful things dwelling in a harsh environment. Each new discovery gives you hope and keeps you looking for the loveliness hidden among sharp rocks and fallen trees.

IMG_2402You continue up. Your loved one is tired, but she’s been called, so you keep going. The trail becomes cruel; each steep rise leads to another, even steeper. You cry silent tears while you put your loved one’s feet on the steadiest rocks and lift her step by step.

You know you’ve been called, too. This trip is ordained. For your loved one, the destination will be freedom, new life. And for you the joy is simply helping her get there. The thought of her traveling this road alone is unbearable. Even now you wonder if she’s really still “with” you. Her face is pale as the clouds; her eyes are glazed like a frozen pond; if she speaks, her words are as sharp as the rocks sliding under your feet.IMG_2404

At last you near the top. But the scene you expected to be lovely and life-giving is stunningly cold and barren. With one arm around your loved one’s back and the other holding her arm, you crane your neck to see beyond the rocky trail and the bare mountaintops. You keep looking, believing: It’s there. Keep going. It’s there.

A few more steps, over the last rise and then down, you’re startled by the sudden beauty of your loved one’s smile. Following her gaze, you too behold at last the beauty of the heights.

IMG_2428A lake, regal in its stillness, is before you.

Water, life, drop by drop, has been collected by the wind-swept mountainsides. Held in an ancient cup formed by primordial fire and ice, the water is green, like fresh ferns and newborn seedlings and spring leaves. An island of rock thrusts its primal shoulder up from the depths; trees, even greener than the water, grow in the steep stone soil.

islandYou’ve made it. You can rest now. Your loved one is safe on the summit of redemption. She has beheld the ancient glories at last. She is new. She’s reborn.

Stay awhile. Reflect on the trip. Did you take the shortest path? Perhaps so, perhaps not. Did you show your loved one every wonder she might have seen? Only the Lord knows.

But think about these things, too, as you gaze on the lake of new life: When your loved one was unsteady, you were there to hold her up. When she was afraid, you were there to keep her safe. When she was lost in confusion and chaos, you found her and led her back. You showed her wildflowers. Birds. Streams. And you smiled with her on the heights.

Makes every step worth it, yes?

For who is God, except the Lord? And who is a rock, except our God? God is my strength and power, And He makes my way perfect. He makes my feet like the feet of deer, And sets me on my high places (2 Sam 22:32-34 NKJV).

Father, you know the Alzheimer’s road. You know our loved ones are weak and confused and you know we’re weary. We rely on Your help every minute, every day. Show us the way, please, Father, and show us the beauty of the journey.