Depression and Alzheimer’s

“Depression is never normal.”  

Not even for someone with dementia.

In the most recent series of posts, we’ve been spotlighting some “what-ifs”: the sudden questions that can blindside caregivers as they contemplate what challenges the future might hold. Today, however, we’re taking a side trip to look at the issue of depression and the impact it can have on a loved one with Alzheimer’s.

According to the Alzheimer’s Association, it’s not uncommon for people with Alzheimer’s to be depressed, especially in the early and middle stages of the disease. In fact, the Association says, “Experts estimate that up to 40 percent of people with Alzheimer’s disease suffer from significant depression.”

And yet, “depression is never normal.” Shortly after I became Mom’s caregiver, I heard those words from well-known Dallas-area geriatric psychiatrist Dr. David Crumpacker. He was addressing a group gathered in a comfortable public room at an assisted living facility. The subject was Alzheimer’s.

Speaking for myself, the fact that 40 percent of people diagnosed with Alzheimer’s become depressed doesn’t surprise me. But Dr. Crumpacker’s words did surprise me. “Depression is never normal.” Not even for someone with Alzheimer’s? No, not even for someone with Alzheimer’s.

What does that mean? Why did the doctor make such a point of saying that, even when someone is diagnosed with such a cruel disease as Alzheimer’s, depression shouldn’t be considered a “normal” consequence?

Because, unlike Alzheimer’s, depression can be treated. And available treatments, the Alzheimer’s Association says, can lead to “significant difference in quality of life.”

And that’s information caregivers should act on. If you even suspect the person you’re caring for is depressed, pursue a diagnosis. As with virtually everything related to the changed behaviors that accompany Alzheimer’s, the first critical step for a caregiver is letting the doctor know.

You’re probably aware that Alzheimer’s can complicate the diagnosis and treatment of other illnesses. That includes depression. For one thing, the two illnesses share some symptoms, such as isolation, loss of interest in activities and hobbies, confusion and impaired thinking. And the cognitive impairment our loved ones experience may make it more difficult for them to describe their feelings and symptoms. Because of this, the Alzheimer’s Association says, “It may be helpful to consult a geriatric psychiatrist who specializes in recognizing and treating depression in older adults.” But caregivers can begin by talking to the primary care physician.

Don’t assume that, because he or she knows your loved one has Alzheimer’s, the doctor will automatically know the issues that most dramatically affect your loved one’s health and quality of life. Moods or behavior you observe that concern you should be brought to the doctor’s attention. I emphasize this because, as a new caregiver, I wrongly assumed the doctor would take the lead. I made the mistake of thinking, “The doctor knows this disease. He knows all the important topics to be discussed, all the important problems we’re encountering in caring for Mom.  If he doesn’t bring it up while we’re here in his office, it’s not really important.”

I was wrong. But I was fortunate. The results of my mistake could have been far more serious than they were.

In the next post, I’ll describe how I learned about the effects of depression on someone with Alzheimer’s. But for now, the facts are clear:

• Depression is never normal.
• Depression is not uncommon in Alzheimer’s patients.
• Depression can be treated.
• Treatment for depression may lead to significant improvement in quality of life for the one you care for.

I’ve experienced that shift from dark to brighter; I pray you can, too.

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Why are you cast down, O my soul? And why are you disquieted within me? Hope in God, for I shall yet praise Him….   (Ps. 42:5  NKJV)

Father, be with us as we care for our loved ones. Help us to see what we need to see, and then do what is necessary to protect them. Thank You that we are never alone.

Christmas Remembered

A repeat of last year’s Christmas post. I hope it makes you smile. All caregivers need extra smiles at this time of year. Blessings to you, alleluia, and glory in the highest!

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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!”

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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)

Welcome, LORD Jesus. You are our Glad Tidings. You know all our joys and our sorrows.  Prince of our peace, hold us while we sing a lullaby, to You and to our loved ones.

 

What If…the one you’re caring for is injured or becomes seriously ill?

The What-Ifs of Alzheimer’s, those panicky thoughts and questions that pop into your head as you go through your days as a caregiver, can steal every tool in your caregiving arsenal: your energy, your strength, your confidence, your creativity. The key to getting rid of the anxiety is to replace it with a plan. Today we consider, “What if the loved one you’re caring for suffers a major injury or becomes seriously ill?”

I confess: this is a question that didn’t keep me awake at night. Why? Mom had always been healthy. She was a physically strong and active woman until depression and Alzheimer’s began stealing her life away.*

Perhaps because the disease attacked her mind so ferociously, I tended to minimize the effects it had on Mom’s body. Alzheimer’s affected her appetite, her willingness to get exercise, her hygiene. Yes, I saw. Yes, I was concerned. But my concern translated to fixing those problems. I couldn’t fight the tangles of protein in her brain, but maybe I could entice her with healthier food options, persuade her to walk with me a bit more, even bathe with her if that would get her into the tub. I knew that, minus any other fatal disease, Alzheimer’s would inhibit her brain function to a degree that would eventually cause her death. But I didn’t consider that, in the meantime, the effects of the disease on her body could shorten her life.

Even when I arrived at my parents’ home early one morning and found Dad trying to help Mom up off the floor in their bedroom, I wasn’t overly concerned.

“Does something hurt, Mama? Where do you hurt?” I asked. I touched her knees, her hips, her ankles. “Here? Here? Here?”

She smiled. “No.” And then, “I can’t do it.”

Dad and I had grown accustomed to Mom’s occasional inability to do what we asked her to do. Sometimes she just shook her head to signal she couldn’t open her mouth—unless we offered her a potato chip. Or she couldn’t get out of her chair to go to the bathroom—“I can’t stand up”—but her legs worked just fine to make an excursion to the coffee shop.

On this day, since Mom hadn’t had anything to eat or drink since the night before, I started there. I brought a straight-backed chair into the room, helped her onto the chair and into fresh underwear and clothes, and got her some orange juice. Then she wanted to go back to bed. So we helped her lie down, grateful she was dressed and had some nourishment.

Later that evening, she was still lying down, still in the same position on the bed. We could see no injury; she said again that nothing hurt. We called the doctor, then called an ambulance. Two days later her broken left hip was replaced with a new one made of titanium. But after the surgery, every rehab session was like the first one all over again. Mom remembered nothing from one session to the next. Eventually she refused even to try. One month and one day after she broke her hip, Mom died.

In our situation, there was little we could have done to change the outcome of the injury. Because Mom couldn’t do the rehab, with or without the surgery to replace her hip she would have been bedridden. She died—with Alzheimer’s, because of Alzheimer’s—of complications from being bedridden.

Still, while we weren’t able to prevent her death, there were issues we could have tackled in advance that would have made the time after her injury easier for everyone—especially for her. The information listed below will, I hope, help you to consider in advance some critical decisions you may one day have to make in a hurry.

• Because Alzheimer’s impairs your loved one’s ability to find the correct words, determining how he feels, what symptoms he’s experiencing, can be challenging. Accurate diagnosis of any illness, and therefore treatment, becomes much more difficult.     A primary care physician who is experienced in treating people who have Alzheimer’s is a treasure.

• As Alzheimer’s takes away their good judgment, it can be harder to convince our loved ones to eat nutritious foods and get sufficient exercise. Weakness and lack of balance can cause accidents and injuries.      Getting a professional aide in to help your loved one with exercise and hygiene is a good investment in terms of health and safety. As the disease progresses, you’ll need to be more and more alert to your loved one’s safety.

• As Alzheimer’s steals the willingness—and, eventually, the ability—to cooperate, recuperation from an illness or injury is more difficult. Rehabilitation of muscles and limbs may be much harder to achieve, or even impossible.   My experience tells me that any treatment requiring repetition of movement or speech will be difficult and perhaps impossible for someone with advanced Alzheimer’s to accomplish.

• Issues such as diet, sleep patterns, and patient cooperation make even the prescribing and administration of medications for an Alzheimer’s patient more complicated. Caregivers may have difficulty achieving the proper manner and scheduling for giving medication, and possible side effects will be more difficult to monitor.     Again, having a doctor who is familiar with the impact of Alzheimer’s on a patient is an immense help to caregivers.

• A sudden illness or injury may necessitate not only hospitalization, but also moving your loved one to a professional care facility for a time. My father and I were shocked when we were told Mom would be released at noon the following day but she could not go home. She would have to be placed in a nursing facility. I had done no research on professional facilities—what was available, where she would get the best care, what we could afford, what would be closest and most convenient for us to visit, etc. We were able to gain another 24 hours before Mom was released, but the surprise and stress and rush to make arrangements that would so deeply impact both my parents’ lives took a huge toll on our whole family.     There is no substitute for doing your research into care facilities before the need is anywhere in view. You may never need to make that choice, or you may end up with weeks to decide, or you may have only hours. Having a couple of options to choose from will free you from worry in the present and panic in the future.

• The time to transition from nursing care to hospice care can arrive suddenly, with little or no warning.     While being “prepared” for that eventuality may seem impossible, knowledge of what hospice is and what it isn’t, understanding how it can benefit a patient and family, and consideration of whether the concept of hospice care fits into your family’s caregiving philosophy—those things will help you if hospice care is suggested for your loved one.

A comforting answer to “What if my loved one with Alzheimer’s experiences a serious illness or injury?”  is this: We’ve thought about that. We’ve looked at many of the issues we need to consider. We’re aware of the options available to deal with those issues. We can always ask for help. We’re never alone. In short, we know we can do this.  

Yes, you can.

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*NOTE: Depression is a subject that’s treated in various other postings on my blog. Because it is such a huge complicating factor to Alzheimer’s, I encourage you to get more information about it. I’ll discuss in greater depth my own experience with how depression teamed up with Alzheimer’s to affect my mother in a new post to appear early in 2018.

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 And the arms of his hands were made strong by the hands of the Mighty God…by the God of your father who will help you, and by the Almighty who will bless you with blessings of heaven above….   (Gen. 49:24-25    NKJV)

Father, help us do our best for those we care for. We rely on Your strength, Your wisdom, and Your love for us and for our loved ones. Knowing You are always near makes us stronger, wiser, more loving. Thank You, Father.

 

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.

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.

 

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.

 

 

 

 

 

 

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)