Exquisite

This is not new information: Every caregiving path is different. As different as each caregiver and the person he cares for, as different as the relationship between them has been and is, as different as their environment and lifestyle and family or lack of family—as different as each of our lives is different. But unique as we are, caregivers recognize each other. With a pang of empathy and immediate respect, we recognize each other.

On Easter Sunday, my husband and I met one of my sons and his family at a restaurant for brunch. At a big round table in a beautiful dining room, our oldest son and his wife and our three senior grandchildren entertained us in the way only they can do—just by being themselves, unique individually and a unique unit in our larger family.

Though the room was full, tables were arranged so everyone had plenty of elbow room. So I was surprised when I felt a touch on my shoulder, turned, and saw that I was just a bit in the way of an older man guiding his wife’s (my assumption) wheelchair across the thick carpet. “Oh, excuse me!” I said and adjusted my chair. Without making eye contact, he nodded and continued on his way.

I had first noticed his well-polished wingtip shoes against the carpet; wingtips always remind me of my father. As he walked away, I noted carefully trimmed silver hair and a handsome dark blue suit, and wished I had gotten a longer look at the lady in the chair. Just about the time I decided they must have been leaving the restaurant, I saw them coming back in our direction. Their table for two was just beyond us. I made certain they had a clear path this time and took the opportunity to see the lady who was dining with this debonair man.

My first thought when I saw her was Exquisite! Smooth, pale skin with little makeup, just a touch of blush, it appeared, and rose-red lipstick. Her dress draped her shoulders and lay across her knees with the unmistakable soft sheen of silk; her hands lay crossed on her lap; her feet rested in baby-pink, low-heeled pumps on the steps of the wheelchair.

My second thought was Alzheimer’s. Her husband wore shoes like my father’s; she wore the expression and air that had settled over my mother during the years of her decline into Alzheimer’s.

Our lovely celebration continued. My grandsons teased their big sister as they always have and she enjoyed it as she always does. On their parents’ faces I saw reflected the amazing light of their children. Harold and I basked in the light of the generation sitting with us and the later ones we expect to see. It was one of those exquisite occasions that marks and highlights the sweetness of life.

At the table just beyond, there was silence. Courtesy kept me from watching them openly, though I doubt they—he—would have noticed if I had. I did glance over my shoulder occasionally and each look confirmed my second thought. I saw him reach across her plate and, with a smile, offer her a spoon. She looked at it, then at him; he laid it on her plate. At one point, her expression changed ever so slightly—was it a smile? He ate slowly, deliberately, watching her, always watching her. No talking. Just watching. I don’t think I imagined the look of exquisite pain I saw on his face.

We were sampling each other’s desserts when he wheeled her across the carpet again. This time they didn’t return.

Later, at home, I surrendered to the thoughts I had pushed back as we celebrated. This man had taken his wife to Easter brunch. Was it a tradition for them? Had he chosen her clothes? Put blush on her cheeks? Applied her lipstick? How long had it been since she got dressed up on her own? Stroked perfume across her wrists, straightened his tie, handed him his handkerchief? Had it been sudden, the silence? Or had it been that slow decline that let him deny reality, hope against hope? How did it feel—having someone leave who is more than half your life to you? Just leave? Leave you alone, to take care of them alone?

If I had asked my father that—how does it feel, Daddy?—while my mother was still alive, he would have given me his standard answer to my concern for his well-being: “It’s ok, Baby. It’s fine. I’m fine. We’re fine.” It was true, I knew. But I also knew far “fine” is from “exquisite.” Because they had been exquisite together. Nothing less than exquisite. Still, when she died, he wanted her back. “However she is, I want her back.” I didn’t wish her back into that empty shell, but to him, her shell was always full of his love. Always exquisite.

If you know a caregiver, pray for him or her. If you are a caregiver, know that I pray for you.

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 For one will scarcely die for a righteous person—though perhaps for a good person one would dare even to die— but God shows his love for us in that while we were still sinners, Christ died for us.          (Rom. 5:7-8  ESV)

LORD Jesus, You call us “friends.” You gave Your life for us. In Your infinite kindness, please bless those who are giving their lives as caregivers to loved ones and friends. In Your name, we ask that You give them wisdom and strength, and please, Jesus, remind them they are never alone. Show them Your presence. May they feel You smiling on them, their loved ones, and their work. Thank you.

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Christmas Remembered

The techno tree stood on a maple table in front of the windows in the den. An unlikely hero, it was less than two feet tall counting the motorized revolving base. Forest green branches stuck out from its black metal trunk, short and spikey at the top, longer toward the bottom, giving it the approximate shape of a fir tree. A Christmas tree, unadorned save for fiberoptic lights that, at the flip of a switch, glowed in changing colors from the tip of each branch.

My sister gave the tree to my parents in the hope it would brighten this holiday dimmed by Alzheimer’s. But my father had little faith anything could penetrate Mom’s darkness.  Thanksgiving had passed like any other day, and the weeks that followed carried no promises of Christmas cheer. As I made daily trips from my home to theirs to help him care for her, I saw no signs this year would be better than last.

A year ago Dad and I made cookies, wrapped gifts, lit lights and hung ornaments on a small, fragrant fir tree. I draped a white sheet over a side table and there, on 250 thread count snow, I arranged the old figures around the shaggy stable. Joseph, bound by human devotion to a task of divine magnitude, held a pottery lantern in his upraised hand. Mary, all fear erased from her scratched peach face, gazed upon her sleeping Son. Even the donkey and the sad-eyed cow looked to the manger where Jesus, Light of the world, dozed in the flickering rays of Joseph’s paint-chipped lantern.

But Mom had forgotten about the stable and the Baby, and though she ate most of the cookies, she professed to like “those regular ones” better. As for the gifts, they evoked so many questions, repeated hour after hour, day after day, eventually I put them out of sight.

So I understood Dad’s doubts. This year, until the gift of the funky little tree, we made no Christmas preparations. Twelve months had stolen so much more from Mom and filled the empty spaces with new fears, more confusion. The good days were rarer; the bad ones, worse.

Almost forgotten, the tree sat dark until late evening on one of the difficult days. As Mom sat at the kitchen table with Dad and me, her face still wore vestiges of the anger that had propelled her through the day. She perched crooked and stiff on the edge of the chair. Her feet shuffled like children who couldn’t be still. Our spirits were brittle with fatigue; the house, chill with despair.

Perhaps it was desperation that turned Dad’s gaze out of the kitchen, away from the heaviness that shrouded the table. Then his feet followed his eyes into the den.

“Where are you going?  What are you doing?” Mom’s voice was hoarse and hard.

christmas-treeI watched with her as Dad walked to the table where the metal tree with the bottle-brush boughs stood almost invisible against the heavy drapes behind it. He said nothing, only bent down and flipped the switch on the tree’s plastic base. From the fiberoptic branches tiny beams of color, delicate as starlight, shone on the curtains and ventured out across the room.

With a tiny hum, the tree turned ever so slowly. And ever so slowly, Mom relaxed. Her feet were still. Her shoulders sagged into the back of the chair.

“It’s a Christmas tree, honey.” Dad’s voice was low and soft, like the muted sound of church bells traveling over snow. “Do you like it?  It’s a Christmas tree.”

Just as softly, I began to sing.  “O Christmas tree, O Christmas tree, how lovely are thy branches….”

The old German carol. Mom’s favorite. In the time of my childhood when the first strains of Christmas music opened my heart like a jewelry box ready to receive all the bright treasures of the season, I waited each year with great anticipation for my mother to hear “her” carol playing on the radio. When she did, she would stop what she was doing and sing along. My sister and I watched her, smiling in wonder at the change in her face.  Every feature softened as she lifted her chin and raised her eyes to a long ago past. We could feel the room grow warmer as she sang. When the music ended, she always said the same words: “We learned that song in school.”

It was like a story to us, Mom’s singing and her words. Most of the story was told in the look on her face and the emotion in her voice, with the outcome always the same:  love for the fair fir tree.

Peace. Happiness. That was Christmas, she taught us, using only her memories and the words of her favorite carol.

Now, in the December of her life, all unaware, Mom reminded Dad and me what the season was about. Apparently not even Alzheimer’s could steal that remembrance from her. Somehow, evoked by the techno tree with its sweet hypnotic light, the melody of the old carol had survived in her memory, like a gift still wrapped in bright hope, the paper unwrinkled by age, the ribbons unfaded by the experiences of a lifetime.

“O fir tree dark, O fir tree fair…” I sang on to her. Then at the end, “You learned that song in school, right?”

And once again the gift unwrapped itself on Mom’s face. Anxious lines opened into softness and, subtle as candlelight, her eyes flickered in recognition of…what?

Peace, the heart of the Christmas story. A tree, a Gift. The sweetest story.  The oldest, the eternal carol.

“Glory in the highest!”

And she brought forth her firstborn Son, and wrapped Him in swaddling cloths, and laid Him in a manger, because there was no room for them in the inn.And suddenly there was with the angel a multitude of the heavenly host praising God and saying: “Glory to God in the highest, And on earth peace, goodwill toward men!”  (Luke 2:7,13-14 NKJV)

Dear Jesus, help us to care for our loved ones in this joyful season. Send us Your joy, Your love, Your peace.

A Big Mistake

My father was going blind when I began helping him care for Mom. There was a lot he couldn’t see: how dirty her hands were, the stains on the shirt she’d been wearing all week, the mold on the cheese he and Mom were still eating. Dad thought he’d been doing a bang-up job with taking care of Mom and the house and the shopping and laundry, and I couldn’t bear to burst his bubble.

So I made a big mistake: I didn’t mention the dirt. I just cleaned it up.

red error

Some days I found it hard to climb the three steps to the porch, put my key in the lock, and sing out a cheery “Good morning!” to Mom and Dad. There was no way of predicting how Mom would feel and act—would this be the day I feared most, when I couldn’t find a way to calm Mom down and had to call for help? I knew Dad felt the same dread—I could read it on his face—but I wanted him to be able to relax while I was there.

So I made a big mistake: I smiled and acted calm all the time, happy and confident and never flustered.bad idea

When Dad and I took Mom to the clinic, the doctor directed most of his questions to me. I didn’t want Dad to feel insulted that the doctor turned to the patient’s daughter instead of her husband.

So I made a big mistake: I sat back and let Dad answer all the doctor’s questions. If I had anything to add or correct, I did it by telephone later.

error

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I didn’t recognize my actions as the mistakes they were until Mom was no longer in my care. As she lay in a hospital bed after surgery for a broken hip, the hospital social worker told us Mom would be released, but only to a care facility. She was unable to do the necessary rehab and wasn’t strong enough to go home. She had to go to place where skilled staff could meet her needs.

Dad shook his head. “No. She won‘t go to one of those homes.” When I didn’t immediately back him up, he turned to me with a look of shock. “We can do this, Katrinka. There’s no need to send her anywhere. We can do it at home, right?”

My father was a  reserved man, but virtually everyone who met him came to know one critical fact about him: he lived for my mother. He needed no one but her. Wanted no one but her. And from the very beginning of our journey through Alzheimer’s, I knew his one goal was to keep her at home. With him.

So my heart broke to hear his plea: “We can do this, Katrinka, right?”

He expected me to say yes. To smile with a can-do attitude, let him do all the talking, let him make the decisions.

That’s when I realized the mistakes I’d been making. Essentially, I had lied to Dad.

  • I had let Dad think he’d done a great job caring for Mom before I stepped in to help, keeping from him the dangers posed to both of them due to his bad eyesight.
  • I had purposely let him think that taking care of Mom (and him) was no problem for me at all.
  • I had let him assume that he was alone responsible for directing the doctor, that all decisions about Mom’s care were based on his input alone.

lie truth

I should been frank about the sometimes filthy conditions he and Mom had lived in. I should have told him how overwhelmed I felt, how exhausted I was handling the caregiving alone—especially since it might have prompted him to share his own feelings with me.  I should have spoken to the doctor in front of Dad, so he’d know that what he saw of Mom and her illness was limited by what he wanted to believe, and that the doctor needed to hear all the truth in order to keep Mom as healthy as possible.

I should have told Dad the truth.  Telling the truth back then might have eased the pain I was about to inflict by speaking to him now what he had to hear.

“Daddy, no,” I said. The social worker stepped back to give us some privacy.  “We can’t do it at home. This is different.”

His square hands hung at his sides in a way I’d never seen before. I was used to seeing them hold something—a wrench, a hammer, clothes for Mom or a glass of juice. Or if they weren’t working, they were thrust in his pockets, jangling his change and car keys. Now they just hung from his wrists with nothing to do.

In the face of his pain, I willed myself to continue. “Mom needs more care now than you and I know how to give, Daddy. It’s up to us to see that she gets what she needs. We have to let this happen.”

It did happen. More swiftly and smoothly than I could have imagined. In his relentlessly hopeful way, Dad spoke of it as a temporary situation, just while Mom rested and regained her strength. Then she’d be back home with him. Again, I didn’t contradict him. It was far too late for that now.

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My point for other caregivers is this: Be honest. Don’t pretend.  Do what you have to do; say what you have to say.reality

In my case, the truth might have resulted in better care for Mom. Being truthful with Dad would have shown him far more respect than trying to protect him from hard realities. And being honest in expressing my feelings and asking for help would have resulted in a better situation for all of us—Mom, Dad, me, and my family.

I thought I was being kind. I wasn’t. I thought I was being strong. I wasn’t. I thought I was protecting Dad. But I was trying to protect myself, too. It didn’t work. Trust me: facing the pain together—from the very beginning—would have been easier on both of us.

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He shall cover you with His feathers, And under His wings you shall take refuge;
His truth shall be your shield and buckler.  (Ps 91:4  NKJV)

Father, with You there is strength in the face of all difficulty and pain. Be with us, we pray, and help us serve and protect our loved ones with the shield of Your truth and mercy.

 

The Bluebird of Happiness

Often it seems nothing we can do or say will bring happiness to our loved ones with Alzheimer’s. Since they gradually lose the power to choose their own pleasure, caregivers are left to use trial and error to guess what might bring a smile.

angry bluebirdFor me, when often became even more often, and even more often became ‘way too often, I re-discovered a happiness strategy from back before I was a daily caregiver…back when I was a daily mom. What I remembered is this:

Sometimes it’s what we don’t do that makes the difference between sullen and happy in those we care for.

I remembered the occasional evenings when I allowed my sons to skip a vegetable at dinner time…and decided maybe Mom didn’t need to wear fresh clothes every day. Some days I didn’t insist she drink a full glass of water at every meal; if she wanted juice at lunchtime, that was fine. No socks with her tennis shoes today? OK.

slim bluebirdWhen I let some things slide, I found that, even if I couldn’t always get her to smile, I could at least erase her frown.

Why was it that skipping an action worked better doing something?

I believe the “never mind’s” worked better because the “please do’s” were beyond Mom’s grasp. She was able to let me know if something we were doing was UNpleasant, but she could no longer think of things she might enjoy. Or maybe she could think of some things some times, but she wasn’t able to put them into words.

The things we skipped depended, of course, on our activities for the day and, even more so, on Mom’s safety and hygiene. If we had a doctor’s appointment scheduled, I couldn’t let Mom go out without shoes. And we always had to keep her hands clean. Getting Mom to take her medications was a must; making sure she drank enough fluids was a must; and there had to be a limit to how many days she could wear her favorite outfit without washing it.

The “must’s” were seldom easy. But they were possible. How? By accommodating Mom’s wishes the same way I used to accommodate my children. I said yes as often as possible and insisted on no when it was necessary.

And I went a step further with Mom. When I had to insist she do something my way, I tried to include an enticement of some kind.snowy bluebirdFor example:

If Mom scowled when I came toward her with shoes in my hand, sometimes—on days when I knew she could stay indoors—I was able to agree: “No shoes? OK.” But if we had to go out, I had to insist. “Well, you’re going to need shoes today. But here…why don’t you feed Charley-Dog some treats while I help you get your sandals on?” I knew feeding Charley was a fun–and dependable–distraction.

If Mom refused her lunch, I could say, “OK, but I’m afraid you’ll be hungry later. Tell me if you are, please.” If, however, she had already skipped breakfast, I had to insist she eat at least a few bites. And I usually had to feed her myself. Beginning with a potato chip got us off to a good start, and a couple more interspersed through the process helped me keep things moving.

When it came to clothes, I almost always let Mom wear her threadbare or hole-y favorites, which I put through the washer and dryer after she went to bed. As long as she was clean, dry, and modest, she was fine to go wherever we had to go. If her old clothes made her feel better, we were happy for her to wear them.

Please understand: when I say I used  some of the same strategies with Mom that I used with my children, I mean no disrespect to her. Alzheimer’s had robbed her of reason, judgement, and self-control. To expect things from her she could no longer give would have been cruel. Instead, I simply made it easier for Mom to go along with the necessities. And I had no fear of her expecting the same “privileges” every day–each day was all too new for her. I believe Mom remembered me and Dad when she awakened in the mornings; that much memory allowed her to trust us, at least most of the time.

Our loved ones with Alzheimer’s travel through life constantly on the edge: not remembering where they’ve been, unable to see where their next steps will take them. So it’s up to us to be flexible. We must make their paths as wide and comfortable as we can, by putting as few demands on them as possible.

nervous bluebirdHappiness for someone with Alzheimer’s? I think it’s like a little bird, a nervous little bird, to be sure, but willing to rest in a spot feathered with reassurance and safety. If we provide a house and fill it with all the comfort and security we can manage,

flying homeeven if we don’t often see the little bird, we can trust that our loved ones are all right.

Blessed are those who have regard for the weak; the Lord delivers them in times of trouble. The Lord protects and preserves them—they are counted among the blessed in the land….  (Ps. 41:1-2  NIV)

Lord, you are the source of all our wisdom. When we turn to you and ask for help, you always answer. Thank You for helping us help our loved ones.

Do They Know We Love Them?

How can we show them our love?

It’s a painful question most caregivers must eventually face. How can we help someone with Alzheimer’s know, believe, trust our love?IMG_0064In the beginning, we caregivers are almost as confused as those we care for. We struggle mightily to appreciate the difference between our loved ones’ willful actions and the words and actions dictated by Alzheimer’s. We ache with the knowledge of what is to come. We do our best to do it all, do everything for them, and yet everything grows every day and what we do is never enough.

Meanwhile our own fear and frustration are a weight we carry, not entirely invisible, revealed in sighs and frowns and impatient words. Time passes while we learn more about the disease and the role we must play.not quite full moonIf we’re wise, we ask for help and accept it when it’s offered. We take care of ourselves as well as our loved ones and in doing so, we keep going. For them.

And eventually we realize that everything we’ve done for them has also been for ourselves. Looking back to before Alzheimer’s, we realize: we’re different. Whether we’ve seen it as a duty to them, a job no one else could or would do, a way to repay the love and care we’ve received, or a privilege we’ve been accorded, our care for loved ones with Alzheimer’s has made us grow.

But we can’t avoid the ugly truth: while we’ve been growing through the pain and the work and the caring, our loved ones have been shrinking. moonliteThough we do our best to see them as they were, we must admit they’ve changed.We can’t see the mother she was, the father he was; can’t imagine her twisted hands sewing a wedding dress, his crooked fingers tightening a bicycle chain; can’t hear the words she used to sing while she polished the floor on her hands and knees; can’t feel the solid safety of his arms as he carried us asleep from car to bed.

We can’t see them as they were. But we remember.

And they remember, too. They must. Somewhere inside our loved ones, they still know what love is, and the memories remain. Where else would they go? They weren’t flesh that they could die, so we have to believe they live on, out of reach because of Alzheimer’s, but living in spite of it.

In those memories, they know our love. They remember when we helped them dress and held the spoon they couldn’t manage. They remember how gently we washed them and how slowly we walked with them and how often we answered their questions. They haven’t forgotten, at least not forever.IMG_0071So it’s up to us. We can choose to trust in the pain we see, the sadness of their forgetting; or we can choose to believe in the joy of the unseen, the happiness of their remembering.

For me, it’s an easy choice. I choose joy.

I would have lost heart, unless I had believed that I would see the goodness of the LORD in the land of the living. (Ps. 27:13 NKJV)

Lord, help us to believe. Help us to trust that in Your perfect care for our loved ones, You make certain they know we love them. Thank You, Father that our love for them is only a shadow of Yours. Thank You for being our Guide through the wilderness of Alzheimer’s.

No Time to Hide

Family members and caregivers who attempt to deny the signs of Alzheimer’s in a loved one will inevitably discover the cruel truth: hiding from Alzheimer’s doesn’t work. hide-and-seek-gameAlzheimer’s always wins the game of Hide (the symptoms) and Seek (to keep living as though nothing is wrong).

Why would we try to keep our loved one’s illness a secret?

Denial—it’s the first step in the grieving process: deny the reality of an event or situation that we simply find too painful to face. Because we know the magnitude of the changes Alzheimer’s will bring, not only to the person affected but also to everyone close to that person, many of us try to overlook symptoms for as long as we can. Even when we’re finally unable to ignore them, we can steadfastly refuse to consider Alzheimer’s. “It’s stress,” we tell ourselves. “Fatigue. Maybe old age.”

For months, neither my father nor I would even say the word “Alzheimer’s.” Not to each other; certainly not to anyone else. And as long as the doctor didn’t say it, we reasoned, we didn’t have to believe it.

under the couch

When the doctor did finally make the diagnosis, it came almost as a relief to us. Hiding from reality is exhausting.

Even then we kept Mom’s illness a secret. Why? Embarrassment. When I was a child, Dad had watched my grandfather die a slow and difficult death, from what people at that time described as “senility”—in my grandfather’s case, a particularly ugly form of senility. But when Mom’s doctor looked at her medical history, he told us Granddad probably suffered from Alzheimer’s.  That’s when Dad vowed he would never let anyone know Mom was sick “that way.” Yes, eventually he did tell people she had Alzheimer’s, but only after months of making excuses and inventing far-fetched stories to explain her behavior or her absence from family gatherings.

There was a time when many people felt as Dad did. Spouses and family were ashamed of the changes the disease wrought in their loved ones. Even today, when it seems almost everyone knows someone affected by Alzheimer’s, many families opt to stay “in hiding” rather than take their loved one out of the house. A patient who refuses to bathe or tend to other matters of personal hygiene is difficult to live with at home; in public, the sights and smells that accompany Alzheimer’s can be humiliating. Erratic or hostile behavior can be frustrating at home, but it’s even more difficult to manage in public. At home, sudden mood changes charge the atmosphere with tension; in public, such changes can be frightening.

under the deskBut we repeat: hiding Alzheimer’s—or hiding from it—doesn’t work. Efforts to deny it will end in defeat. Attempts to keep it under cover are sure to fail. Alzheimer’s symptoms and behaviors will not be ignored.

And, of course, they shouldn’t be! Because maybe it isn’t Alzheimer’s. Maybe it’s a different, treatable disease. No matter what the cause of symptoms, delaying a diagnosis out of fear is always a mistake.

If it is Alzheimer’s, hiding won’t get our loved ones the help they need. They need all the relief medical science and family and community can offer. They need us to be alert for the times and situations that make life even more difficult for them. We ourselves need support, physical and emotional, from friends, extended family, counselors, physicians, professional caregivers.

open your eyesAlzheimer’s isn’t pretty. It’s not amusing, not interesting, not easy to look at,
even from a distance.

But those who have the disease are still here with us. To see them, we must look at Alzheimer’s—or, more accurately, look through Alzheimer’s. Yes, as time passes, it gets more difficult, but if we keep our eyes open, we will reap the rewards, for ourselves and our loved ones. We can claim every good day—or hour, or minute—for them; every easy smile; every instance when our love and service overcome their fear and confusion.alzh sttrongFor God has not given us a spirit of fear, but of power and of love and of a sound mind.   (2Tim:1:7   NKJV)

Almighty Savior, You have told us we need never fear. Remind us, please, that You are our Protector in all things at all times. May we hide in You, using Your strength and care to serve those we love. Thank You, Jesus.

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.