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.

 

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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.

 

Tissues in Your Pocket

Most Alzheimer’s caregivers realize early on that we have little control over what any day will bring. Planning each day in advance may give us a sense of control, but so much of Alzheimer’s is unpredictable. Based on my experience, caregivers spend at least as much time reacting as acting.

are-you-ready

One of my mom’s major goals in life was to be prepared for anything that might happen to her or her family. I remember her purse was both tool box and first aid kit, containing a screwdriver, bandages, string, scissors, various nuts and bolts she had found on streets and sidewalks—once I even saw a fish stringer in there. But the things we used most often were the tissues she always carried. She stuffed her already bulging purse with them and stashed them in every pocket on any piece of clothing she wore, “just in case.”

“Just in case.” That phrase covers a lot of territory for caregivers. We can’t predict what might happen in the next few minutes, much less the next few hours. But…unpredictable doesn’t have to mean unprepared.

For caregivers, being prepared is a state of mind.

I wish I had seen that truth earlier. Instead, of all the emotions that rolled over me during my first weeks of caring for Mom, fear was predominant.

be-prepared1

Fear hung around long after shock left. I spent only a couple of weeks being surprised at things like Mom putting Dad’s shoes in the trash, or telling me how lovely the artificial flowers smelled at the grocery store, or accusing the neighbors of peeking into the windows. I soon learned such things were simply to be expected.

Anger lasted longer. I was angry at the disease, at my father for hiding it for so long, at myself for missing the signs, and, yes, sometimes at my mother who often seemed to enjoy the chaos she created. But after a while, anger became a motivator. My frustrations prodded me to look harder for cause and effect relationships I could use to smooth the rough road we traveled each day.

For example: I learned I didn’t always have to explain to Mom what I was going to do. Announcing I was about to brush her hair or help with her shoes often resulted in a barrage of “No’s,” maybe because she felt I was telling her what to do. So I began to say less and simply do what had to be done. When my actions were a surprise to Mom, it took a minute or two for her to puzzle them out. By that time the job was usually finished. Using the disease against itself lessened my anger and fueled my confidence.

Still, fear of catastrophe stuck around for a long time. I was afraid the time would come when I couldn’t control Mom’s anger and she or someone else would get hurt. Would I be able to get her to take her medications every day? What if I couldn’t make her get into the car? Or out of it?state-of-emergency

Adding to the pressure of my fear was the feeling I absolutely had to make things work. I had stepped into caregiving of my own accord. No one asked me to. Dad couldn’t do it alone, and he refused to allow a nurse or professional into their home. So, ignorant of what I would be facing, I just jumped in. But after only a few weeks, I began to question whether I could manage Alzheimer’s alone. I started each day with dread, praying for help, praying for a miracle.

And you know what? Miracles came. Not the sudden cure I hoped for, but miracles nonetheless. Little ones I almost didn’t notice at first, like a close-in parking space when we were running late to an appointment. There were big ones, too, huge ones like the doctor who finally found that Alzheimer’s wasn’t the only danger Mom faced: He diagnosed her severe depression and prescribed the medication that gave her, for a while, more good days than bad.

miracles-ahead

In fact, so many miracles came my way, I began to expect them. On some otherwise-impossible days, Mom would at least agree to take her meds. When we were out of the house, I realized people seemed to sense her instability. I learned how to steer her away from situations that, I knew from experience, might provoke her anger. If she refused to get in the car, I postponed the errands and rescheduled the doctor’s appointments. If she refused to get out, I sat with her until she got tired of saying no.

Although some of the solutions worked pretty reliably over time, I knew no amount of advance planning could ever address the daily challenges of Alzheimer’s. But I was freed from paralyzing fear because I began to expect an answer in difficult situations. And because my trust was based, not on my power, but on the power and faithfulness of God, I stopped imagining disaster. Because I believed  the Giver of all good gifts, the Maker of all miracles,was on my side, I could think more quickly and clearly, come up with a way, find one more miracle.

As the Alzheimer’s progressed, Mom continued to pick up her tissues and put them in the pockets of the old green cardigan she wore every day. I took a few out every now and then, secretly of course, so she’d have room to add more. The day came, though, when it no longer occurred to her to pick them up. So Dad and I did it for her. Putting a fresh tissue, carefully folded, into her sweater pocket made us feel a bit more powerful in the face of Alzheimer’s. “Now, Mama,” I’d say. “Now we’re ready for anything.”

ok-symbol

For me, the miracles that carried us down the rocky roads of Alzheimer’s are like tissues I saved in the pocket of my spirit. There were so many problems, but so many more miracles. And each problem solved was a promise of more solutions to come.

I pray you fill your own pockets with confidence. Begin to expect miracles. Watch for them. And in the hardest times, remember the ones God has already sent. Each one carries His assurance: He is with you, to help you. He will never leave you alone.

With a pocket full of faith, we’re ready for anything.

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You will not need to fight in this battle. Position yourselves, stand still and see the salvation of the Lord, who is with you….Do not fear or be dismayed… for the Lord is with you.     (2 Chronicles 20:17   NKJV)

Loving Father, we know You are on our side. We know You can do all things. We know You want us to come to You with our fears and our needs. Thank You for fighting on our behalf. Even in the face of Alzheimer’s, Your constant love casts out our fear.

 

Parenting Our Parents

An incident I witnessed on a vacation many years ago continues to shine a light on one of the hardest tasks of caregiving.

During our hike through a national park, our family stopped in a picnic area to have lunch. As I made sandwiches for my three young sons, I could hear wails from the picnic table next to ours.

“But Mom, it’s my money.” The little boy’s face was red; his eyes were swollen.

An older girl and another boy, siblings, I’m sure, looked almost as sad. They watched the mom as she said, “John, I know you worked hard for this money. But you aren’t taking good enough care of it. If I hadn’t seen it and picked it up, your allowance would still be back there on the counter in the gift shop. You can spend it, but I’ll carry it with me.”

I tried not to stare, but I couldn’t escape hearing John’s next plea: “But Mom! I’m old enough! I’ll do better. Please?”

monkey parent“Johnny,” his mom answered, and I’m pretty sure I heard tears in her voice, too, “I don’t want you to lose everything you worked for. If you lose it, all of us will be unhappy. I’ll take care of it for you.”

I remember how sorry I felt for Johnny. But I hurt for his mom as well. We want so much to make our children happy, but there are times when we just can’t. Sometimes we have to say no.

Since my children are grown now and have children of their own, I thought I was free from having to make those hard choices. I was mistaken. Like many caregivers, I had to step back into the parenting role again.

Parenting my parents.

Mom was in her sixties when Dad realized she could no longer balance the checkbook. Mom had always paid the bills; Dad took over that job, too. As pots and pans were scorched on the stove because Mom forgot about them, Dad became the cook. When he ran out of clean clothes, he started doing laundry. They went to the grocery store together; Dad did the shopping while Mom wandered up and down the aisles, stopping to look at greeting cards or artificial flowers or bars of soap.

Dad kept these changes to himself for as long as he could, but eventually Mom’s behavior became so bizarre it could no longer be hidden.

“Why didn’t you tell me, Dad?” I asked after one of Mom’s harder days.

“Now Katrinka, I wasn’t hiding anything. I figured your mama just wasn’t interested in her old routines anymore.”

Balderdash. You don’t raise your children or your parents without coming to know them inside and out. And I know that, inside, Dad was 1) afraid of the possibility Mom was ill, and 2) determined that if she was ill, he would keep their home running just as it always had. “Normal.” That’s what he wanted. The two of them living in the pink brick house, taking care of each other, as they had ever since they were married.

help when you need it

While they did stay in their home, “normal” became me spending my days with them in the pink brick house. At first I helped Dad take care of Mom. Later on, when macular degeneration rendered Dad almost blind, I found myself more often in the role of parent, mainly to Mom, but sometimes to both of them.

Remember when you put things like scissors and knives and matches away, out of sight and out of reach of your children? That’s one of the first things I did when I discovered Mom had Alzheimer’s. I hid anything I could imagine might cause her harm if she used it incorrectly.

And that was just the beginning.

Dad and I had to watch closely to make sure Mom didn’t turn on the range or other appliances. Once I found her using one of Dad’s screwdrivers to open a package of paper table napkins, so the tools were moved to a safer place. We no longer left Mom at home alone, even when she insisted she’d “be fine.” She would sit right where she was, she said, while I drove Dad to the bank or the post office. But I had to say no; Mom had to come with us. She didn’t cry like little John did. She became angry, shouting and waving her arms. We’d wait, ask her later if she’d like to go for a ride, and sometimes she said yes. When she said no, Dad and I postponed our errand.

Out of desperation, sometimes I treated Mom as I had treated my sons when they were children. I often bribed her with ice cream or lunch at her favorite café if she’d go to the doctor with us first. Sometimes I made up stories about the magical powers she would gain by taking the medications she didn’t want to take.

Like Johnny’s mother, I knew I had to take charge. Certainly Mom, and often Dad, too, simply weren’t capable of using good judgment when making choices and decisions. Mom, of course, was impaired by Alzheimer’s.

rabbits eye to eyeDad’s judgment was impaired by his love for Mom.

The no’s to Dad were always hardest. No, it wasn’t a good idea to plan a big party at a restaurant for Mom’s birthday. No, taking Mom camping “one last time” in their bright yellow tent might be fun for him, but not for her. No, I didn’t think it was wise to take a long trip in their travel trailer. No. No. No.

Like Johnny, Dad made promises. He promised to ask people to be quiet at the party. He would gladly pat Mom’s back ‘til she fell asleep in the tent. He was sure she’d love a trip in the trailer, but if she asked to come home, he’d bring her home, right away. He promised to tell me when he couldn’t see well enough to drive.

normalFrom Dad’s perspective, I’m sure it didn’t seem too much to ask for simple, normal life. How I wanted to give him just that! And I tried. But from my perspective, it was a struggle to maintain whatever modicum of normal we could hold on to.

Of course, Alzheimer’s was the problem. Both Dad and I tried to say no to Alzheimer’s. Neither of us was successful…except in one regard: somehow we managed to say no to the disease stealing all our joy. Specifically, I kept my eyes and ears and heart alert for the occasions when life felt like old times. I made sure Dad noticed on mornings when the three of us sat at breakfast with toast and tea. I rejoiced openly when we arrived home from the store and Dad and I put away groceries with Mom telling us what to put where. I prayed with gratitude as my husband and I watched Gunsmoke with my parents: Mom asking the name of each character, Dad answering her and then offering everyone something to drink.

foxesNormal.

As I held on to as many of the routines as I could, I also held on to my temper. Usually I was able to resist the frustrated tone that tried to creep into my voice; instead, I held on to the respectful attitude I had learned from my parents. There was no question in my mind that each of them deserved my respect as much at this time of their lives as they ever had.

Easy? No. Whoever said, “The hardest thing about everyday life is that it’s every day” spoke truly. And most caregivers recognize the words as an extreme understatement.

But let’s also be sure to recognize the bigger truth of caregiving:
As we work to preserve what we can of the “normal” life of the past, we’re also safeguarding—in the present—something even more precious: our loved ones’ dignity.

Children, obey your parents in the Lord, for this is right.  “Honor your father and mother,” which is the first commandment with promise: “that it may be well with you and you may live long on the earth.”   (Eph. 6:1-3 NKJV)

Father, help us to be patient with those we care for as You, Father, are patient with us.

The Hardest Things — Anxiety

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

unknown

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

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

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

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

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

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

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

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

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

There’s a reason for that:

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

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

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

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

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

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

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

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

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

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

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

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

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