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.”

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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.

sad bird

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.

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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.

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

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

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

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

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

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

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

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

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

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

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

“Glory in the highest!”

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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.

bird open mouth

“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.

snowy bluebird

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.

soaring

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Christmas Remembered

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

“Glory in the highest!”

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

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

A Big Mistake

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

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

red error

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

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

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

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

error

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

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

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

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

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

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

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

lie truth

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

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

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

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

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

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

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

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

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

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

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

 

The Bluebird of Happiness

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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