How to Turn “No” to “Yes”

In my early days of caregiving, Mom’s “No!” was one of my greatest fears.  I felt powerless against it. It meant a fight. And I could not fight my mother. Sometimes, of course, what Mom was refusing to do was a task that could be put off until another day: letting me trim her nails, for example. If that was the case, I didn’t push very hard. But often, even though the task was a simple daily chore, it was important, for health or hygiene’s sake. So I had to learn to fight.

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Three ways to turn “no” into “yes”:

• Add a distraction or two.
• Don’t ask. Just do it.
• Wait and try again later, as if it’s the first time.

 

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Some days Mom could turn Alzheimer’s into a two-letter word: NO. Regardless of the issue or question at hand, her response to it was “No.” She could say it in a variety of ways:

• Sometimes she ignored me. Mom became an expert at avoiding eye-contact, simulating deafness, or speaking over me to any other face in the room—like my father’s, or Charley the poodle’s, or the weatherman’s on TV.
• Sometimes she used body-language. If I asked about putting on her shoes, for example, she’d wedge her bare feet tightly under her chair. Or if I wanted her to take her medications, she slapped her hands over her mouth.
• And sometimes she simply spoke up with a sturdy “No,” again and again if necessary, louder each time.

What to do?

• Add a distraction or two.

Distractions, of course, will vary from person to person, because each of us has different likes and dislikes. Extreme likes and dislikes make the best distractions. With Mom, I used a favorite food; or a sudden search for what-looked-like-a-flea in Charley-dog’s fur; or a new face on the evening news team. Once I discovered the value of distractions, I began to collect them in my mind like precious gems.

Example: Mom developed a dislike for taking her medications. Though they were clearly a necessity each day, I discovered the less emphasis I put on her taking them, the better. If she said no when I offered them to her, I’d wait a while, then introduce a distraction. Maybe…potato chips! A small handful of potato chips on a napkin were well-nigh irresistible, both for Mom and for Charley. As Mom munched and shared, munched and shared, I’d casually put her medications into her empty hand. As if by reflex she put them in her mouth, drank a sip of the water I offered, and went back to munching and sharing. Distractions could keep Mom from asking quite so many questions in a row. Distractions let me brush her hair. They were a God-send.

• Don’t ask; just do it.

If you know what the answer will be, why ask the question? Especially if you need a
“yes” but are certain to get a “no”?  So don’t ask. Just do it.

Example: I stopped asking Mom if she wanted to wash her hands before a meal. Though I knew washing was a necessity, especially with baths so few and far between, I knew she was sure to say no to it. So instead of trying to get her up and to the sink, I engaged in a stealth operation. Without a word about what we were about to do, I’d wet a washcloth with warm water, wring it out to semi-wet, and put soap on it. Then I’d wet a second cloth, wring it out so it wasn’t dripping, and carry both to where Mom was sitting at the table. Meanwhile I’d talk about whatever was on TV or who we might visit this weekend or where I used to buy my vacuum cleaner bags and oh my goodness why are there so many kinds they make it so confusing…. Talking nonstop, I’d rub the soapy cloth over her hands and then go over them with the damp one. Her hands were reasonably clean before she could even react. If she did get around to fussing at me, it would usually be with a demand to get that mess (i.e., the soap) off her fingers and get them dry!  I could comply with that order quickly and cheerfully.

• Wait and try again later, as if it’s the first time.

Some tasks absolutely required cooperation from Mom. Getting into a bathtub or shower, walking outside to get into a car, even putting on fresh clothes—these are things which I couldn’t do for her if she decided to put up physical resistance. So in these cases, I had to be prepared to take no for an answer. And I learned quickly that arguing made the situation worse: Alzheimer’s will not allow its victims to reason their way down from emotional crises. So I learned to try once, maybe twice, then leave the matter alone and try again later, as if it were the first time.

Example: On a day when we had a doctor’s appointment, if Mom refused to go outside to the car, I let the matter go. I let time pass and let Mom forget, if she  would, that we had ever talked about it. After an hour or so, I’d mention it again, as if it were the first time: “Let’s go see Dr. Smith, Mom, and then we’ll go out to lunch!” If I thought it would help on that particular day, I’d tell Mom we were going to lunch without mentioning we’d stop at the doctor’s office first. If she said no again, I’d wait longer. Yes, sometimes it took hours to get her to cooperate, so I learned to make appointments later in the afternoon. And if Mom agreed to leave at 11:30 am for a 2:30 pm appointment, we left then. Better to be early than not get there at all. But sometimes we didn’t get there at all. I had no option: I’d simply have to call the doctor to say Mom wouldn’t come. But I found that giving Mom time to relax and forget her earlier refusal usually worked. We didn’t miss many appointments.

A key part of this strategy is making each attempt sound like it’s the first time you’ve talked about it, because for the one you’re caring for, it may seem as if that’s exactly the case. There’s no value in saying, “Mom, I know you don’t want to do this today, but we have to go to the doctor.” Instead, I could downplay the doctor and emphasize some new distraction. Or I could simply take her arm and lead her to the car with no explanation at all.

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I had to keep Mom safe. I hoped to keep her comfortable. I wanted to make her happy. But her “no” stopped me. Using the three strategies above, I found I could help Mom cooperate on the difficult days. Using them, I wasn’t fighting my mother; I was fighting Alzheimer’s. I didn’t raise my voice; that made things worse. I didn’t get physical—unless she was putting herself in danger. I just found some good ways to get done what had to be done.

Before we close, here’s an important note.

If your loved one is causing harm to herself or someone else, you can’t depend on distraction, surprise, or delay. You MUST be prepared to intervene. Consider now whether you’re able to handle such a situation yourself. If not, be prepared to summon help: get a commitment in advance from a neighbor, relative, or friend or call 911.

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Father, You are the source of all wisdom, strength, patience, and love. We trust You to light our way as we care for our loved ones. Please answer when we call for help and remind us we are never alone.

“Are not two sparrows sold for a copper coin? And not one of them falls to the ground apart from your Father’s will. But the very hairs of your head are all numbered. Do not fear therefore; you are of more value than many sparrows.”      (Matthew 10:29-31  NKJV)

 

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.

 

What If…?

The what-if’s of caring for a loved one with Alzheimer’s can defeat us before we even start to fight. They can be overcome—knowing the truth of that statement is the first step to victory—but defeating them requires action.

We’re all familiar with what-if’s. They pop up all the time, it seems. What if I get lost? What if I have a flat tire? What if I oversleep? What if…? What if…? What if…?

What if something bad happens?

Caring for a loved one with Alzheimer’s is difficult enough without entertaining the what-if’s. If you allow the Alzheimer’s what-if’s to get a foot in the door, they’ll suck all the air out of the room. Your caregiving creativity will faint from lack of oxygen and the confidence and determination that get you through your day will melt and run down your back like sweat.

Yes, it’s hard to escape fear. The extreme unpredictability that goes along with Alzheimer’s produces thoughts that can range from “What if Mom won’t get in the car to go to the doctor today?” to “What if I get sick? Really sick? Who’ll take care of Mom then?”

How do we turn those thoughts off? Well, we can’t just push them out of our heads. What we must do is replace them with other thoughts. In this case, we replace the negatives with positives, the doubts with certainties, the fears with strategies for action.

In short, we plan.

Plan. I know from experience that’s easy to say and hard to do. Deciding in advance what you’ll do in a particular situation is especially challenging when you’re dealing with a disease like Alzheimer’s. Symptoms vary widely. There’s no dependable time-line for progression of the disease. And each person experiences Alzheimer’s in an absolutely unique way. So where can a caregiver even begin to plan?

Actually, the starting point is simple to determine:

You start with what is. Right here, right now. Keeping your mind occupied with solving the challenges of the present can turn fearful thoughts into a feeling of accomplishment.

And don’t forget to watch for opportunities to laugh. Mom trying to chew with her dentures in upside down began as a mysterious problem and ended with laughter and a potato chip snack. Thinking and talking about good memories, short or long term memories, is better than imagining disasters.

For the larger questions and situations we anticipate will come up in the future, we engage in more formal planning. First determine the issues that must be planned for. Then study the information you find on the topic, talk to people who have knowledge and experience in each area, and come up with a list of options. Alzheimer’s caregiver support groups are an excellent source of information. You’ll meet people there who are facing or have already faced the situations you’re planning for. You’ll find candid discussions, information based on personal experience, practical advice and suggestions. In addition, there will be a trained group leader who can direct you to even more helpful resources.

Perhaps you’ll be able to rank the options in order of your preference, perhaps even determine exactly what you think is best to do. But at the very least, when the issue comes up and it’s time to take action, you’ll have a list of options.

Information is the best defense against the what-if’s. In the weeks ahead, I’ll be writing about some of the issues I faced as my mom’s disease progressed, things like the extra complications Alzheimer’s adds to other illnesses, legal documents you may need, the decision on if and when it’s time to consider admitting your loved one to a professional care facility, hospice considerations.  Listing those subjects here makes them seem cold and clinical and clear-cut. They are none of those things—instead, they’re intimate and emotional and confusing. But as you think about them, and as you read and hear how others in your position have dealt with them, you’ll find yourself putting your own head and heart into your own personal caregiving journey. The panicky “What-if’s” will give way to deliberate consideration of wise options for the one you love and care for.    

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How long must I wrestle with my thoughts and day after day have sorrow in my heart? But I trust in your unfailing love; my heart rejoices in your salvation.  I will sing the Lord’s praise, for he has been good to me.  (Ps. 13:2,5-6 NKJV)

Dear God, time is your creation. Protect us as we travel through it, holding tight to the hands and hearts of those we care for. Protect us from fear and doubt and panic.  Remind us of your unfailing love–help us revisit the many, many times you have held us up and helped us move forward. Give us Your wisdom to see what matters, deal with what is, and plan for what will be. In Jesus’ sweet name we pray. Amen.

 

 

 

 

 

 

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.

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.

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?

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.

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.”

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.

 

We Are All Caregivers.

Last month, our family experienced a great tragedy. I trust that, in the aftermath, we will know healing, and peace. But for now it feels like the tragedy is still happening. The aftermath isn’t here yet. Sometimes it feels like it will never come.

The breeze was cool as we walked toward church this morning. And dry. All the colors were sharp and clear: a black garden hose cutting across green grass, purple and pink petunias snuggling against the smooth brown trunk of a crape myrtle, a glittery white car parked beside us in the lot. Texas humidity can make the air so thick, things look dull or blurry. Not today. Today everything was shining clear.

Doesn’t it surprise us, when we’re struggling to get through a painful time, that, around us, life goes on? The dog with the irritating bark still wakes us each morning just after dawn. The neighbors down the street still hold hands when they walk in the evening. As we crossed the courtyard outside church today, parents who seemed unable to contain their love scooped up their children, held them squealing over their heads, then drew them down into hugs and kisses. A throng of fast walkers parted to spill around the older man with his cane who lifted his gaze from the sidewalk to respond to their hellos and good mornings. Inside, people greeted each other with hugs and smiles before they walked to their usual Sunday seats.

And there I was, in the midst of them, thinking, “I used to do that. I used to feel like that.” I wondered if the man who held the door for me had read my sorrow. Surely not. I smiled at him, after all, so what clue would he have that my heart is broken? Did the lady beside me notice the tears trickling from beneath my glasses during the chorus of the final hymn, when the soaring notes and comforting words cut my thin-skinned heart with their beauty? Why would she? She was surely celebrating her own joys, or mourning her own tragedies.

Who knows how many mourners were in the pews today? How many worshipers struggled as hard as I to get up, get dressed, go to church? How many cars in the lot were driven there by people every bit as lost as I am?

Everyone has a story.

As I stood to leave the pew, the lady beside me stood also. We walked out of church in silence, but I thought I could feel her looking at me. Yes. When I turned to her, her eyes were deep with understanding. She knew it too: everyone has a story. And in a brief look, she told me she cared about mine.

Life goes on around us. And in us. It’s still life, even when it’s not light and cheerful. And sooner or later, everyone needs care.

So we all can be caregivers. The requirements are easy enough:  we must only be human, be willing to look outside ourselves to the other humans around us, and recognize the need for comfort because we have experienced that need ourselves.

Thanks to all you caregivers out there. I may not know your names, but I recognize you. Thank you.

Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God  (2 Corinthians 1:3-4  NIV).

Lord, thank You for Your infinite love and care. We trust You will hold us close, shepherd us through our troubles, and lead us home.