Exquisite

Caregivers recognize each other.

Yes, each caregiving path is unique. As different as each caregiver and the person he or she cares for, 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, the tables were arranged so everyone had plenty of elbow room. But when I felt a touch on my shoulder, I realized 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. I adjusted my chair, noting as I did so the gentleman’s well-polished wingtip shoes. (Wingtips always remind me of my father.)

Without making eye contact, the man nodded and moved on. As he walked away, I noted his carefully trimmed silver hair and handsome dark blue suit, and wished I had gotten a longer look at the lady in the chair. Then, 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 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 thoughts I had pushed away 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 question—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 know. But I also know how far “fine” is from “exquisite.” Because yes, my parents had been exquisite together. Nothing less than exquisite. And when she died, he wanted her back. “However she is,” he told me, “I want her back.” I didn’t wish her back into the empty shell of Alzheimer’s, but to him, even that 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— ⁸ 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.

 

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.

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.

The Choices We Make

Some decisions are harder to make than others. And usually the most difficult decisions must be made in the most stressful circumstances. No wonder we don’t always choose the best solutions to the agonizing challenges of Alzheimer’s.

Drawing a line in the sand in the beginning of the caregiving journey isn’t a good idea. It leads us to believe we have no options. The truth is, we always have options. 

My father was losing his sight due to macular degeneration, but he refused to let “strangers” come into their home to help him care for my mother. He also vowed never to put her in a care facility.

He justified the first decision by saying “I don’t want someone else in this house. I’d feel invaded.” In other words, that choice was motivated by his personal preference for privacy.

The second choice he justified on the basis of his experience with his own mother many years earlier. When my grandmother was bedridden as a result of a stroke, one or another of my father’s siblings arranged for her to live in what was then called “a nursing home.” My father visited her one time, with me and my sister. We wandered the halls and finally found her room by the sound of her crying “Help me help me help me.” We entered to see Grandmother lying naked on top of the bedclothes. Dad’s first reaction was a shout at me and my sister: “Get out!” As we scuttled out the door, we heard him cursing at all the nurses and doctors who were nowhere close enough to hear him.  Years later, I wasn’t surprised to hear his promise to keep Mom out of a care facility. She was better off at home with him, he said, just the two of them.

So I stepped in to help care for Mom.  Someone had to.  Untrained, inexperienced, and, yes, frightened of what the future might look like, I spent most of my days at their home, returning to my family after dinner. As grueling as the schedule was, as difficult as the challenges became, Dad and I managed. But only with the help of God. He alone could have helped me come up with the practical ideas I came to call miracles. I tried out first one and then another and then another until the problem of the day—or the hour—was addressed. With His help, we not only survived, but Mom was able to enjoy pleasures we thought were long past.Still…I should have pushed Dad harder to get professional help. A trained aide would have added greatly to Mom’s safety, especially with bathing and other issues of hygiene. I was surprised to see that, when Mom did have to be hospitalized for a broken hip, she gave the nurses much more cooperation than Dad and I had enjoyed.  Later, because she couldn’t do the rehab necessary to walk again, the doctors said she must go to a care facility after all. We feared she’d fight the caregivers there, engage in the long term shouting matches we had experienced at home, or refuse to eat, drink, take her medications.  None of that happened. Mom was calmer and seemed much more comfortable at Golden Acres than she had at home. Dad visited every day. He made lots of new friends among the “strangers” at the home, and was free to enjoy more activities both at home and away than he had in years.

So Dad’s decision to reject outside help worked out ok. But in hindsight, I see that everyone—Mom, Dad, and I—would have been better off with the additional expertise of a professional. No less important, Dad and I would have benefitted greatly from some time away from caregiving.  Three or four hours a week in the beginning, three or so days a week as the disease progressed—having that kind of help would have allowed all of us to enjoy more of Mom’s last years.

In addition, I see that, because the doctor overruled Dad’s decision to keep Mom out of a care facility, her last weeks were comfortable for both of them. Someone else, not Dad or I, talked her into eating and taking her medications.  Someone else took care of her hygiene.  Which left Dad with the opportunity to just spend time with her. He could see for himself she was not upset to be away from him. He could see her needs were met. And he could see in her eyes that, even in a place strange to her, she still knew him.

My point is that lines drawn in the sand at the beginning of a caregiving journey may be erased. Tides such as additional information, progression of the disease, or just clearer thinking can wash away the logic or emotions of early decisions. What’s important to remember is that we always have options. If we can’t see them, someone less involved often can.  

We have to believe. Believing we have choices helps us find them.

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Save me, O God! For the waters have come up to my neck. I sink in deep mire, Where there is no standing; I have come into deep waters….

Hear me, O Lord, for Your lovingkindness is good;
Turn to me according to the multitude of Your tender mercies.   (Ps. 69:1-2,16  NKJV)

Father, please give us wisdom to care for our loved ones. When we struggle to help them, let us seek Your guidance. Remind us that You are always with us, and Your desire is to give us and our loved ones abundant life. Thank You, Lord.

 

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.

 

 

 

 

 

 

Comfort in the Storm

For people with Alzheimer’s, comfort has much more to do with the mind than the body. If we can keep our loved ones with Alzheimer’s comfortable, we’re giving them a treasure.

My mom might have been sitting in her favorite spot on the couch, wearing her favorite loose black slacks and the multicolored blouse she’d worn four days in a row. Perhaps she had just eaten, or maybe she had a glass of orange juice on the table beside the couch. Almost surely she would be barefoot; shoes, in her opinion, were to be worn only when absolutely necessary. So was she comfortable?

Not necessarily. Her body might have been satisfied, but, as with all of us, the state of her mind determined whether she was truly comfortable. While we can direct our thoughts away from imagined catastrophes and unreasonable fears, our loved ones with Alzheimer’s are at the mercy of whatever ideas or worries Alzheimer’s throws at them. We became accustomed to the signs of Mom’s unease. She shuffled her feet. She looked around as though trying to find the source of a noise she couldn’t identify. She would half-rise from her seat, then sit back down, only to rise again a few seconds later.

If we asked her if she needed something, she might answer through gritted teeth, or not at all. The discomfort caused by the goblins in her mind could inflame her anger, or it could reduce her to a silent form with panic in her eyes.

That kind of discomfort is hard to fight. But Dad and I tried, with encouraging success.

The first step was to identify, if at all possible, the source of her worry. Not always an easy task. Though certain scenarios did appear frequently, it was never something we could predict. It might be an unpaid bill, or neighbors who were angry, or people coming to the door who wouldn’t leave her alone.

In the beginning, we were stymied. Words were usually useless, but we couldn’t protect Mom from an unseen danger. At last, in a flash of understanding that could only have come from heaven, I found a way to convince her she was safe. We couldn’t see the danger, but we could produce a visible solution.

In the case of the unpaid bill, I could write a “check” in front of her, put it in an envelope, and put it out on the mailbox for the postman. When, very quickly thereafter, the envelope disappeared, Mom was sure it was on the way to the electric company. If she thought the neighbors were angry, I’d cut a rose or put cookies on a plate, go outside for a few minutes, and come back inside with a smile and an empty plate and the gracious greetings and thanks from the neighbors. With no dial tone on the phone, I called the police in front of her and let her hear me telling them about the people who wouldn’t leave her alone. When I hung up, I’d smile and tell her how grateful the police were for the information. And guess what! They had already caught the culprits!

The key was doing something visible to Mom to show her we took her seriously. Some people consider actions such as these lying to our loved ones. I believe just the opposite. I believe handling Mom’s fears in this way was more truthful to her reality, and showed more, not less, respect to her. Imagine how it would feel to tell the people you trust most in the world about something that makes you worried or afraid, and have them reply, “No, no, no. Don’t worry about that. It never happened. It’s just your imagination.” Not only are the words of no use, they seem cruel to me.

When someone has Alzheimer’s, it gives them their own reality. They gradually lose their understanding of what we call the real world. They can’t come to our reality, so we must go to theirs in order to calm their fears.

Not long ago, my cousin sent me a picture of her and her mom having lunch at a diner. Aunt Sylvia’s hard days far outnumber her good ones, and the good days aren’t as good as they used to be. But in the selfie my cousin took, just their two smiling faces, I could see in her eyes that Aunt Sylvia’s was comfortable. Her hair wasn’t the groomed style she always had; her face looked thin and worn. Still, she was with the one who takes faithful and loving care of her, and on this day, that was enough for her to feel secure. Even in unfamiliar surroundings, even in a wheelchair—Aunt Sylvia’s smile was relaxed.

Comfort. Not appearance, or the ability to recognize someone, or constant cooperation. Comfort is the treasure we try to give our loved ones.

  In the multitude of my anxieties within me, Your comforts delight my soul.  (Ps. 94:19 NKJV)

Lord, we ask for your inspiration and enlightenment as we care for our loved ones. Help us, please, to understand what they want and need. We know You can comfort them even when we cannot. Thank you for Your loving care for them.

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.
.

Holding On

The last on our list of “The Hardest Things” for caregivers to deal with is loss of our identity. We have been someone special to our loved one; now we could be anybody.

Or nobody.

People with Alzheimer’s, their own personalities long since stripped away by the disease, can eventually lose the ability to identify even those who are closest to them. Not just names are lost, but also faces and voices and the feeling of family or friendship. This effect of the disease arrives sooner for some patients, later for others. Those who escape it do so by virtue of dying before they experience it.

For the Alzheimer’s patient, all connections are dissolved. He or she is alone.

For the forgotten sons or daughters or spouse or friends, loss of identity in relation to their loved one is exquisitely painful. The caregiver has now become a stranger. In especially cruel cases, unknown loved ones and caregivers may provoke fear or anger in an Alzheimer’s patient. But even if caregivers are perceived to be kind and helpful, they’ve become kind, helpful strangers.

One reader told me he is an only child, caring for his mother who has Alzheimer’s. She asks him repeatedly if he knows her son. He tries to tell her he is her son, but she doesn’t believe him. She continues to ask.

Perhaps you’re the spouse of an Alzheimer’s patient. You and your wife are together virtually every minute of the day, yet she never says your name anymore. There’s no glimmer of recognition in her eyes when she looks at you. The years you’ve been married appear to count for nothing now.

Maybe a faithful friend who visits your loved one regularly is no longer greeted with a smile, but with a blank face instead. The friend is heartbroken. She believes she’s of no help anymore.

When we’re no longer known by those we love most, the lack of connection leads to a lack of words, an emptiness that’s hard to describe. The person with Alzheimer’s is beyond the point of recognizing the loss. But the caregiver, the son, daughter, spouse, friend—these people suddenly experience what may be the most devastating pain inflicted by the disease: where once we were needed, special, able to touch the heart if not the mind of our loved one, now we’re invisible.

It’s easy to understand the caregiver’s thought that maybe now is the time to give up.

Fatigue and despair tell us, The road is too hard. The non-stop work doesn’t improve anything; it only brings you closer to the end. You can’t hide the pain anymore. It’s too big to carry. Surely someone else can do the job now. Your name means nothing to your Mom anymore. Anyone else’s face could take the place of yours; anyone else’s hands could do what yours do. You’re lost to your mother now. She’s lost to you.

But have we truly lost our connection with the one we’re caring for? I don’t think so. We just have to carry it on our own now. It’s up to us to hang on to it through the hardest times of Alzheimer’s. The person we’re caring for has been robbed of the ability to live out her identity, but she is still the person she was before Alzheimer’s. The relationship we had still exists; it’s just that now, only one of us is able to make the connection visible. The curves and angles, the highs and lows, the deep and the wide—one of us must keep them now for both of us.

Since any time is a good time to bring in help with caregiving tasks, now is perfect. Since it’s always helpful to share thoughts and feelings with someone who will listen with mind and heart, now’s a great time for that, too. It’s a fine time for a break, to get away for a while, to rest mind, heart, and body. I pray you do those things.

Because if you do, or maybe even if you don’t, you’ll be in a better position to see the real nature of your caregiving. The bigger picture. Perhaps at this point, with no more rewards of a smile, a few words, a pat of recognition, you’ll finally understand that the caregiving has been a gift. To both of you. Every facet of it has defined or reinforced who you are in relation to the one you care for. And you affirm the identity of your loved one, also. As long as you relate to her as a daughter, she is still a mother. As long as you care for him as your spouse, he is still a husband.

Though our loved ones have been robbed of the ability to live out their own identity, they are still God’s unique creations. When we’re with them, holding the essence of our relationships in our hearts and in our caring hands, the people we care for are real. They maintain their person-hood.

They live bigger than Alzheimer’s. And that’s a victory.

 But now, this is what the Lord says–he who created you…he who formed you…:”Do not fear, for I have redeemed you; I have summoned you by name; you are mine.”

Is. 43:1  NIV)

Father of us all, You know who we are. You made each of us unique. Help us as we guide our loved ones on their journey back to their true identities, back home to You. Thank You for Your assurance that we are all loved, each one as if there were only one. Show us how to give You glory, Lord. Amen.

The Hardest Things — Anxiety

The unknown is frightening. To all of us.
Just imagine how much of what is known becomes unknown for someone with Alzheimer’s.
And as caregivers, we have already seen how much of Alzheimer’s is unknown to us.
So there’s plenty of anxiety to go around. And seeing it, either in these words or in person, can be disheartening.

But we don’t have to surrender to it. Weapons are available to fight anxiety.

In the early stages of Alzheimer’s, symptoms come and go. One day Mom knows exactly where her sweater is: where it always is when she’s not wearing it, lying across the back of the living room couch. A couple of days later, she looks for it “everywhere,” not even seeming to recognize it when she sees it on the couch. The next day, she’s able to grab it as we go out the door to breakfast. Mom doesn’t say anything to me or Dad about the confusion, but she’s tense now. Every day.

Later, when the symptoms are more serious and almost constant, Mom is upset about many more things. Anything she sees or hears may become cause for worry. A news story about a bank being robbed: “Is our money in the bank? I want to see it. Did someone get it?” Hail on the roof during a storm: “What is that? Who’s beating on our house? Someone’s trying to break in!” If she can’t find her sweater, she is certain someone has stolen it, telling us to call the police, louder and louder, until I put the sweater in her hands.

Still later, she understands much less of what she sees and hears. She doesn’t talk much anymore. But she still gets anxious occasionally. I can see it in her eyes, the expression on her face, the shuffling of her feet. I try to determine what’s bothering her: Is she hungry? Thirsty? Does she hurt somewhere? Too hot? Too cool? What does she need? Sometimes, with miraculous assistance from the Almighty, I’m able to find something, a change of some kind, that makes her face relax. Sometimes I can even see the tiniest of smiles, not on her lips, but in her eyes.

As for me and Dad, in the early stages, we’re continually trying to stay one step ahead of the symptoms. Continually surprised by new ones. Questioning whether this or that odd behavior really happened yesterday, because Mom’s totally normal today. We know something’s wrong, but we don’t want to upset Mom, so we pretend all is well. But the strain reveals itself in a tone of Dad’s voice, or a puzzled look on my face. As hard as we try to protect Mom from our anxiety, we’re not always successful.

Later, we are worn by the constancy of the symptoms. Mom gets upset so often, we’re on guard all the time. But even when she herself is relatively calm, Dad is exasperated by her repeated questions, her reluctance to eat, her lack of exercise. I’m worried about Mom’s incontinence, conscious of her dirty hands and hair, concerned about her hygiene in general.

As Alzheimer’s steals more and more of Mom’s awareness, Dad and I are more determined to keep her comfortable and well. And less able to do so. The difficulty in determining her needs causes us both anxiety and pain. Again we see evidence for our belief that Alzheimer’s is harder on patients in its early stages, but gets easier for them as they lose awareness of their situation. For caregivers, Alzheimer’s doesn’t ever get easier to bear.

Maybe you’re wondering about the statement we made in the beginning of this post:
We don’t have to surrender to anxiety. Weapons are available to fight it.
It’s true. Please keep reading.

In presenting ways to handle the anxiety and stress Alzheimer’s brings, we’re going to change the order of the presentation: we’ll address helps for caregiver stress first, before we look to helping our loved ones.

There’s a reason for that:

The caregiver is the most important and effective weapon against the anxiety of the one cared for. Helping the caregiver is absolutely essential to helping the person with Alzheimer’s.

• The most effective way to deal with the stress of caring for someone with Alzheimer’s is talking. Talk to a spouse, a friend, someone you trust. Talk to someone in a support group who’s been in your shoes. Talk to a pastor or counselor. Just talk. Speaking about what you’re going through doesn’t change what you’re going through, but it can change your attitude and approach to caregiving. You have someone to share the experience with you. Even sharing only in words relieves the feelings of isolation and loneliness a caregiver may feel. You may find that friends, a counselor, a support group member may have suggestions you haven’t investigated yet. And just speaking your concerns, frustrations, and pain to a sympathetic listener somehow makes the burden seem lighter.

• The next most effective weapon against caregiver stress is help. Bring someone in to stay with your loved one and give yourself a break. Bring someone in to help with bathing or cooking or housework and enjoy the support and the company they can provide. Seeing, understanding, and experiencing the truth that you do not have to do everything yourself will lighten the burden you carry, refresh your body and spirit, and make you a better helper for your loved one.

• And finally, do what is necessary to take care of your mental and emotional health, as well as your physical well-being. Caregiver stress and burn-out can cause serious and lasting medical problems. By all means, let your physician know you’re a caregiver. He/she can help you deal with the added stress on your body and mind.

What can we do when anxiety attacks the one we’re caring for?

• First, believe that you will find a solution. You will always find a way to defuse a tense moment. Reminding yourself of that truth will motivate you to keep trying, think creatively.

• Listen as calmly as possible. Just let your loved one talk. Sometimes she will forget what she’s concerned about—or just get tired of talking.

•Answer questions patiently. Again, creativity helps. Arguing with someone with Alzheimer’s never helps.

• Use actions as well as words to show that all is well. Show your loved one a bank statement to reinforce your assurance that her money is safe. Explain what the statement shows; she may no longer understand it, but the confidence in your voice and the official-looking papers may give her a sense of security. Walk your loved one to the window so she can see the hail, or bring some inside for her to see and feel. After you find the missing item and show it to her, go to each exit door and click the locks, demonstrating that no burglars will be able to break in.
• Employ distractions. Playing music or offering a snack or looking at photos or taking a drive—any distraction that doesn’t frighten your loved one may direct her eyes to something different, giving her time to forget her anxious feelings.

• Try touch. Even when you cannot determine the source of your loved one’s anxiety, your touch may bring her calm or comfort or peace. Holding her hand or putting your arm around her shoulders or lying beside her in the bed may help. Perhaps rub lotion on her hands or feet. The sense of touch and the distraction of your actions may do what words and objects cannot.

• Pray. Don’t wait until “nothing else works” to pray. Pray right away. Any time. Pray out loud or silently, but pray, knowing that you will receive help, and many times, you will see a miracle.

My soul finds rest in God alone…He is my fortress, I will never be shaken (Ps. 62:1 NIV).

Lord, make us aware of Your presence with us. Help us realize You are beside us, doing what we’re doing: working to help our loved ones. Sometimes, we find a way to bring relief to the ones we care for. Sometimes the only explanation for the relief that comes is Your power working for us in miraculous ways. But always, we can do nothing without You. Thank You, Lord, for being here.

Who’s Driving?

Alzheimer’s isn’t a simple here-to-there journey. Instead of a superhighway, it’s a winding road, with switchbacks and opportunities to turn here, or there, or maybe on that path up ahead.

Whoever sits in the driver’s seat chooses the route.

When a loved one has dementia, the issue of decision-making moves front and center almost immediately. Sometimes there’s no question as to who should make the choices your loved one can no longer reason through. But in other cases, family members may have very different opinions about how to meet the challenges, large and small, associated with dementia. Those differences of opinion—between a parent and children or among siblings—can add immeasurably to the difficulties of caring for a loved one.

A spouse who isn’t able to find and consider all the options may yet insist on being the only decision-maker. Or one sibling may have to defend her role as the one best equipped to evaluate conditions and make choices for a parent, while brothers and sisters demand an equal say.

Choosing who is in the best position to make choices in caregiving matters may appear easy from the outside looking in. Surely it would be the relative or friend who has the most daily contact with the person being cared for, right? Would that it were so simple. First consider the fact that the decisions to be made are usually painful ones: Should we take away Dad’s car keys? Is Mom safe to go out into the neighborhood alone? Should someone assume control of finances, home maintenance, medications, purchases, donations, etc.,etc.,etc.? In addition, Alzheimer’s is a disease that affects a whole family. So questions of capability, trust, motivation, and judgment may erupt among family members just at the time when they most need level heads and teamwork.

In my own case, I know I shouldn’t have allowed my father to make all the decisions about Mom’s care. He was healthy, his mind was spry and rational, but he was determined that his life with Mom would not change. His choices were based on emotion, not common sense. So why didn’t I challenge him?

From childhood, Mom taught me to leave Dad alone. To avoid her wrath, I complied. To the letter. After all, Mom called all the shots in our house

Until Mom got Alzheimer’s.

I met Alzheimer’s the day Mom went berserk (I don’t know what else to call it—that’s what it looked like, sounded like, and felt like) in my son’s apartment. Her struggle with me and Dad exhausted her. She landed on the couch like a thrown log, stiff and leaning to one side, but eventually she lay down.I put a pillow under her head and said a prayer of thanksgiving when she fell asleep.

Right about then, Dad’s behavior became almost as mystifying to me as Mom’s had been. He sat in my son’s old thrift-store recliner, staring down at his hands. He turned them palm up, then palm down, then put them on his knees. He neither looked at me nor spoke.

Trained as I was to avoid upsetting Dad, I kept quiet also. No questions – Have you seen her act like that before? Does she do it often? Have you talked to a doctor about it? Not even a puzzled look. I did my best to ignore the tension in the room as completely as Dad was ignoring me.

When my son came home from work, Mom woke up, smiled at him, and called him by name. As I rejoiced that she was “back to normal,” Dad gave me a look that said, “This afternoon never happened. Don’t mention it.”

My obedience to that silent command set the stage for the rest of my caregiving days. I was never in charge. Or, more correctly, I never took charge.

Dad said he and Mom could manage fine; I didn’t disagree. Instead, I simply came to their house every day to “help.” Dad saw no need to take Mom to the doctor. When at last I convinced him, he let Mom do all the talking. Dad said nothing about her bizarre behavior; so neither did I. The many times I asked Dad to get professional help, even for just one day a week, he refused. With a trained aide, Dad would have been able to do whatever he wanted for a day. I would have had a day off. Mom would have gotten more exercise, been safer taking a bath. She would have gotten used to having someone else help her, just in case a day came when neither Dad nor I could be there. (Those days day did come.) But I didn’t insist. Not even for the sake of Mom’s well-being. I didn’t take control, even when I knew Dad was making a bad decision.

As crazy as it seems to me now, I let Dad stay in the driver’s seat while I just hung on, praying we wouldn’t crash.

But you don’t have to do that. Instead of just riding along, you can drive.

The one who makes decisions regarding the care of someone with Alzheimer’s holds an awesome responsibility. The position requires not just common sense, but strength and courage. The choices are seldom easy, and they go on for the rest of your loved one’s life.

Information is a decision-maker’s best friend. Consulting your doctor, an Alzheimer’s support group, your local senior citizens center, and your local office of the Alzheimer’s Association will show you more options and help you evaluate each one. With that information, you can be more confident you’re choosing wisely for your loved one.

I instruct you in the way of wisdom and lead you along straight paths (Prov. 4:11).  (NIV)

Lord, we’re doing our best to guide our loved ones through the wilderness of Alzheimer’s. Please lead us with Your wisdom to make sound decisions. We thank you for Your tender love, Your mercy, and Your faithfulness to all Your promises.