Words: A Matter of Timing

As valuable as words may be in maintaining a calm attitude in those with Alzheimer’s, words can also make a bad situation worse.

In the beginning, I was certain I could make everything ok for Mom: explain away her fears, talk her down from imaginary ledges, even spin reality to suit her mercurial moods. It was a matter, I reckoned,of being kind instead of threatening and accommodating instead of bossy.

 

But, to put it succinctly, I was wrong. My explaining and talking and spinning did little to help Mom find peace once she’d lost it. On the day she responded to my encouraging talk by throwing a chair in my direction, I learned that persuasion was not a caregiving strategy I should rely on.

As in many issues related to caregiving, when it comes to using words, timing is all-important. For example, quiet small talk about familiar things could distract Mom while we sat in a doctor’s waiting room. But on a difficult day, if Mom said no to leaving for an appointment, trying to persuade her did more harm than good. My words were very likely to turn her flat refusal into an all-out battle. A physical one. Mom couldn’t throw that chair hard enough to hurt me, but she did persuade me to leave her alone about going to the doctor.

Another example: Sometimes Mom would sleep late, get up without our help, and skip the bathroom stop that was so critical to getting a good start on the day. I would gently take her elbow to lead her to the bathroom, but on some days she simply refused to go. She planted her feet, jerked her arm away from me, and said “No” in a voice that threatened to wilt the leaves on the ivy plants in the window.

So I’d try a different approach. In dread of a loud, angry day, I became too determined to make Mom happy. I’d offer juice, toast, a bath robe to keep her warm. Maybe a cup of tea?

In effect, I was only increasing her anger. My words-words-words, though meant to accommodate her wishes, were actually putting more pressure on her. Her confusion expressed itself in still more anger. Often Mom left the room to sit alone on the couch. And I was left to contemplate my failure.

It took a while to shut me up, but gradually, as all caregivers do, I learned from experience. I found that using words to keep Mom comfortable was usually effective. But using words to make Mom happy when she wasn’t? No. To talk her into doing something she didn’t want to do? No. To make her believe I was doing what was best for her? No. At those times, words were worse than ineffective; they were fuel for Mom’s flame.

The solution turned out to be simple: I did the opposite of talking. When Mom said no, I backed off. I waited. And then I tried again. Beyond checking on her every few minutes with a smile but few words, I left her alone. I prayed she would find the kind of comfort she most craved, and I would sense any of her unspoken needs. When I went back to her, I always brought up the troublesome subject as if it were the first time we’d talked about it. Sometimes it took a while, but, with few exceptions, Mom eventually agreed to what we needed to do.

Yes, a lot of time could pass while I waited for Mom. Still, even if it made us late to an appointment, waiting was my only option. I would never use physical force, unless she was in danger. I did learn to make appointments later in the day. And I didn’t hesitate to reschedule if that became necessary.

Two more pieces of advice from one caregiver to another: In time, I ceased worrying about other people so much—their schedules, what they might think about how Mom looked or acted. And I gave up trying to keep everyone happy. It was never a good idea in the first place.

Doing what was necessary to keep Mom in her life as long as possible became my major goal. With that goal in mind, I did my best to put my fear and dread away. We tend to create what we focus on; I made myself focus on peace and expect the best.

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And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the only begotten of the Father, full of grace and truth.  (John 1:14  NKJV)

Father, we thank you for sending Your Word, Jesus, to redeem us. Through Him, we accept Your constant companionship. May we use Your grace and Your truth to help our loved ones through this earthly life until they behold Your glory their heavenly home.

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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.

I 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.

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.

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.

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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.

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.

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.

 

Pure Pleasure

Fun is a commodity in short supply in homes where Alzheimer’s lives. Who can tell what will bring our loved ones pleasure? Well, if we pay close attention, sometimes they tell us themselves.

Searching for pleasant activities for our loved ones with Alzheimer’s is like seeking the end of the rainbow: you’re not even sure it’s out there to be found. One by one, the usual pastimes fall away. Reading a book, watching TV, sewing, crafts, even talking on the telephone—now these things bring more confusion than pleasure.

I tried working simple puzzles with Mom. I got out old photographs. I named farm animals and we (well, usually it was only I) made barnyard noises together, and at least once a week I heaped all the napkins and washcloths in a pile in front of her so she could  fold them, painstakingly, one by one by one.  All those activities were successful at some times, and decidedly not at others. So I spent lots of time searching my brain for rainbows I just couldn’t see.

And then, one particularly frazzled evening, I discovered that sometimes Mom could find her own entertainment.

It wasn’t unusual for Mom to be grumbling nonstop while Dad was trying to watch the evening news. The louder Dad turned the volume, the louder Mom talked. This night she was upset about illegal birds on the fence and dirty rats (squirrels, actually) on the lawn. I was preparing dinner as quickly as possible, when she called me out of the kitchen.  “Look, Child!” she said. I looked. She was staring at a closeup of the weatherman on TV.

“Look, Child! Look at his teeth!”

I looked again and, since some comment was clearly in order, I said, “Oh my! What nice teeth!” As the weatherman bowed out and the news anchor returned, I had an inspiration. I said, “Look, Mama. Look at his teeth.”

Thus began an hour or so of dental reviews. Mom watched for people on TV to open their mouths; when they did, she had a prompt comment on their teeth. I chipped in my opinions a few times, and we were entertained ‘til almost bed time. I never knew when Mom might begin another tooth pageant, so on ragged evenings I learned to start them myself. Sometimes it worked, sometimes not, but it was another tool in the arsenal. And Mom discovered it.Please know I’m not suggesting you try doing dental reviews to entertain the person you’re caring for. The point, of course, is that something caught Mom’s attention and I capitalized on it. She was alert and comfortable and calm for a while. That’s entertainment.

I noticed other pastimes Mom initiated. One day at the megamart, she stopped beside a display of artificial flowers. Leaning over to put her nose against the petals, she drew a deep breath. “Oh, they smell good,” she said. “Smell!” I did. From that day on, we often stopped to smell the flowers, real or artificial.

Sometimes when Dad and I were talking, I could tell Mom wanted in on the conversation. She rocked forward and back in her chair, looking from me to Dad to me to Dad. When she was finally ready to say something, it was often a compliment. Maybe something like “Child, I like your hair.” One day, instead of simply saying “Thank you!” I returned the compliment. “I like your sweater today!” With another word to use, “sweater,” she commented on my sweater, whether I was wearing one or not.  Back and forth we found other things we liked about each other. Sometimes Dad joined in, too. If Mom ran out of words, we just started all over again. During times when she was anxious, I could often calm her with a compliment. And sometimes a whole conversation would ensue.

Did these diversions always work? No. But when they did, they were pleasurable to all of us. Mom was able to take off the blinders Alzheimer’s had thrust on her and look at the world around her. She wasn’t nervous or scared, searching for words or wondering what was going to happen next. And yes, I was willing to examine every tooth, smell every flower, and compliment her ‘til the cows came home just for the pleasure of seeing her that way: engaged, comfortable, with life in her eyes.

I spent much of my time as a caregiver protecting Mom. As I watched her, I was asking myself “Everything ok? Everything ok?”  Sometimes I’m sure my caution prompted some of her anxiety. But my close attention also helped me understand something miraculous: Mom could still find pleasure, and I could help her enjoy it.

I urge you to watch, too. The key, of course, is to notice what they notice, and mirror their reactions back to them. Take your pleasure wherever you and your loved one find it. Run with it and don’t look back to see if people are watching. If they are, they’re seeing miracles.

The Lord upholds all who fall, and raises up all who are bowed down. You open Your hand and satisfy the desire of every living thing.  (Ps.145:14,16  NKJV)

Father, we thank You for the miracles You give us every day. Please continue to open our eyes to the help and comfort You are faithful to send us as we walk the Alzheimer’s road.

 

 

 

 

 

 

Are We Fighting FOR or AGAINST?

In the battle we wage for our loved ones with Alzheimer’s, we are not powerless.

No,  we can’t protect them from the disease.   We can’t slow it down.    We can’t stop it. If our battle is against Alzheimer’s, we cannot win.

But what if, instead of fighting against Alzheimer’s, we fight for our loved ones?     That’s a completely different war. We can win that war.

“Fighting for our loved ones.” What does that mean?  It means helping them live as long as possible.   So what does that look like?

 

Dad wants to take Mom on an overnight trip, a drive down to the hill country to see the wildflowers. Bluebonnets, winecups, prairie paintbrushes! But I know spending a night in a hotel room would frighten and confuse Mom to the point of disaster. So I suggest a short drive to some nearby bluebonnet fields. We take sandwiches and eat in the car. It’s good: Mom is relaxed, looking out the car window, chewing her egg salad with serene deliberation. In Dad’s opinion, though, the flowers are a bit sparse. So after we eat, I turn the car toward home. Once there, we take cold drinks out to the back yard and sit in the shade, where we admire Dad’s petunias and periwinkles and coneflowers and the little yellow blossoms on his tomato plants. Victory!

Christmas decorations and brightly wrapped packages cause Mom to ask endless questions. Her shuffling feet show us these sudden additions to the décor are making her nervous. So we back the tree into a corner and put the gifts in the closet for a while. But later we find a funny little motorized tree that we bring to the kitchen table. Only a few inches tall, it revolves, playing carols and shining with tiny multicolored lights. Mom’s not sure about it ’til Dad talks to her, very softly, telling her—the story of the first Christmas tree? No. He’s telling her about the technology that makes the lights glow and fade and glow and fade. And gradually she relaxes. She even smiles. Victory!

Mom has finally had to go to a nursing facility. She’s bedridden with a broken hip, unable—mentally or physically—to do enough rehab to keep the new hip joint in place. Mom’s not talking much, but I’m grateful she seems unfazed by the move from the hospital to yet another unfamiliar place. Dad, on the other hand, is heartbroken. His greatest wish remains unchanged and unfulfilled: he wants her with him. He expected to bring her home from the hospital; instead, she is in another “home.” He will never be happy, he thinks, without her. But the next day, my sister arrives with a small lamp and a comfy chair and a radio, which she promptly tunes to the “oldies” station. And less than a week after the sadness of moving day, Frank Sinatra is serenading Mom while Dad drinks the coffee the lunch room ladies give him every day. Not home, but comfortable. And together. Victory!

Our weapons in the battle for the lives of our loved ones are not complicated to operate, but it does take some practice to learn to use them in this particular war.

Patience—to withstand the onslaught of questions and complaints. Planning—to ease transitions and nip difficulties in the bud. Creativity—to find new substitutes for old habits and favorite activities. Gratitude—to encourage us to accept the help others offer. Determination—to keep us steady in the face of constant change. Optimism—to persuade us that, no matter what new pain Alzheimer’s inflicts, we will find a way to keep our loved ones OK.

And most effective of all, love—to convince us to fight, not simply for our loved ones’ survival, but for their lives.Lord, we can accomplish nothing without You, but with You, we can do everything You call us to do. Thank You for helping us bring Your abundant Life to our loved ones.

“Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls. For my yoke is easy and my burden is light.”      (Matthew 11:29-30  NIV)

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.

For 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.

When 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.For 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.

Happiness 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,

even 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?In 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.If 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. Though 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.So 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.

‘Tis the Season

Holidays—Christmas, in particular—are the source of many of our sweetest memories. But in a house where Alzheimer’s lives, can Christmas bring any more happy memories?

Absolutely.Yes, our celebrations will change, in small ways or large, because of Alzheimer’s. But the love of family and friends will not change. And love is the most important ingredient in our sweetest memories.

As we look forward to holiday gatherings, it’s important for caregivers to know where our focus should be: Our goal is to make those we care for comfortable.

Of course, it would be nice to see our loved ones looking and acting happy. Nice, but not necessary. Comfort is necessary. Comfort is what will keep our loved ones with us, participating as best they can in the pleasures unique to Christmas-time.

Here are a few suggestions for making an Alzheimer’s patient comfortable at holiday gatherings:

Plan small gatherings. A crowded room with lots of people talking at once can make someone with Alzheimer’s very anxious. So consider entertaining just a few family members and close friends. There’s a chance your loved one will surprise you by remembering some of your guests—by face or voice, if not by name. But it’s virtually certain he will be unsettled, maybe extremely so, if he’s in a crowd.

If possible, hold the party at the place where your loved one lives. Those are the surroundings most familiar to him, so he should be more comfortable there than anywhere else. In addition, if he would rather not participate or if he gets tired, he’ll be able to retreat to another room, close by, where you can watch and care for him without leaving the party. If it’s not possible to have the party where your loved one lives, be sure you have a plan in place in case he insists on leaving.

Be prepared to stay close by your loved one and bring an extra store of patience. There will probably be lots of questions—about the decorations, the food, the music, the people, everything.

Try not to talk around your loved one with Alzheimer’s. Include him in conversations in any way possible. Even if he can’t or won’t speak, you can acknowledge him with direct eye contact, perhaps a smile or a nod. And if he does decide to get in on the discussion, let him. If his words might make no sense, it doesn’t matter. He’s participating! What if you think he’s talking too long? Just handle it the same way you handle his conversations with the pharmacist or the cashier or the neighbor who comes for a visit.

Make sure there’s something at the party your loved one likes to eat. REALLY likes. Obviously, having him eat something nutritious before the party would be best; still, he may want to eat again if he sees others snacking. Of course you should also be prepared for him to reject whatever you offer. Remember: the focus is on comfort.Consider bringing out old photos. Even if your loved one looks at some of them every day, chances are they will provide an opportunity for him to interact with your guests.

Music sometimes helps those with Alzheimer’s to relax, especially their musical favorites from the past. Christmas carols may bring a smile to your loved one’s face; he might even hum or sing along. Just remember to keep it soft. Loud music won’t help. Even Christmas music isn’t good if it’s too loud.

What about gifts? If there’s something you know your loved one enjoys (family pictures, coins to count, puzzles, towels to fold, etc.) go for it! The gift needn’t be new; the idea is simply to have something for him to unwrap. But—another reminder of how few things are predictable in a life lived with Alzheimer’s—don’t be offended if he doesn’t like or even unwrap anything you give, no matter how “perfect” you think it is.

Relax. You have invited family and close friends. These are people you know well, people who understand the challenges you face every day. Trust your guests to understand.Look for miracles. They happen every day in the life of an Alzheimer’s patient, so watch for them—expect them—here also. Small things, like a smile, or bigger ones, like wanting to dance or sing, wanting to talk to people, enjoying a gift. And even if your loved one’s reactions are not all that you hope for, you will have kept him present in an important family gathering, present in his life.

Finally, remember to do all you can to enjoy your Christmas season, also. You need some free time. Get help—day care or home care from a volunteer or professional. Perhaps you’ll go out for coffee with a friend. Or bake. Or walk through the mall to enjoy the decorations. Or maybe you’ll take the opportunity to sit quietly and ponder the blessings that flowed from the manger of that cold stable, a manger filled with scratchy straw on which lay a King.Dear caregivers, you will pour out your lives with love on Christmas Day, as you do every day, for those you care for. Love makes memories, so do not doubt: you will make more good memories this Christmas. Lovely and sweet and lasting, they will comfort you in Christmases to come.

Sweet Lord, You came to be with us so that one day we might be with You. Help us, please, to see Your grace and truth. Help us to show Your love to those we care for in this season that celebrates Your birth.

And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the only begotten of the Father, full of grace and truth.  (John 1:14 NKJV)

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.”

My 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.

A 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.

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….”

But 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.

For 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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The Things We Do

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

Or do they?

The 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.

Cool! 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.

Back 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.

As 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.What 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.

No, 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.

Trust 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.