The Power of Need (2)

I first published this post in October, 2013. I hope — once again? — you find it helpful.

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As much as we love them, we still get tired.

As much patience as we show them, we still get frustrated.

As many times as we come back to the caregiving task, and come back and come back and come back, we still wish it were easier. More pleasant. Or over.

But the task goes on and here we are.

Why?

For the same reason we showed up that very first day: need. When we look at our loved ones, the need we see in them has the power to pick us up and keep us going. It makes us dig deep for more patience. And it draws us back to the caring, day after day.

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Need. In my parents’ home, I could see it, yes, but I could also feel it, like an atmosphere that weighted the air.

I left the early morning scent of grass and pansies behind as I stepped over the threshold.

“’Mornin’, Katrinka!” Dad bellowed from the kitchen.

I smiled as I always did when Dad called me by the name that only he used. But my radar had already detected a something’s-not-right signal in his voice. Couldn’t be Mom; she sat at the table, tea in front of her, a little orange juice left in her glass, and toast spread with her favorite plum jelly cut into bite-size pieces on her yellow breakfast plate. Charley-Dog sat at her feet, waiting for the treats that were sure to drop down to him. Everything in order—but not right.

“How are you this morning, Mama?” I asked as I made my own tea in the kitchen.

No answer.

I sat at the table and tried again. “You doing ok, Mama?”

She shifted in her chair, smiled, and tapped one index finger against her cheek.

Dad sat down hard and gave a loud sigh, like steam escaping from a pressure cooker. “See that?” he said, nodding toward Mom. “That’s all she’s done all morning. Drank her juice ok, but took one bite of her toast, spit it out, and won’t eat another thing.”

When I looked back to her, Mom’s lips were still smiling. But the rest of her face frowned.

“What is it?” I stood over her and studied her cheek. When I touched it she backed away. “Does something hurt, Mama?”

Again, the tapping. Again, Dad’s sigh, to which he added harsh words: “Marie, tell us what you want to say.” Then, to me, “I looked in her mouth. Can’t see a single thing wrong.” And back to Mom, softer this time, “Marie, eat some of your toast. You’ll feel better.”

Surprisingly, Mom complied. She picked up a little square, one with a big glob of jelly on it, and put it into her mouth. As soon as she closed her jaws, they snapped open again. She worked her lips and tongue until the toast fell out.

“Daddy, it has to be her teeth,” I said. “Or something with her jaws.”

“I thought so too. But I checked and her teeth look fine. Her jaws? How could she hurt her jaws?”

By now Dad’s voice was so loud, it had blown the smile from Mom’s face.  She half stood, sat again, shuffled her bare feet on the floor beneath her chair. While she shuffled, I gently touched her jaws. “Will you open your mouth for me, Mama?” She lifted her head, but kept her mouth closed. “It’s ok,” I said. “I won’t touch anything; I just want to look.”

In this blog, we’ve talked about the drastic decline in Mom’s personal hygiene. Barely often enough, I managed to get her into the bath tub. Far less often, I sneaked in a shampoo. But her dentures? I hadn’t ventured there. Getting them out, cleaning them, and getting them back in? The right way? No. I had drawn the line at teeth. A perforated line, maybe, but broad and bold. Dad used to run a toothbrush around in Mom’s mouth occasionally, but she hadn’t allowed that in a long time. Years. So I really wasn’t anxious to examine Mom’s mouth and teeth.

But, need. This room—Mom with no breakfast and that tapping finger, Dad with the anger he always wore when he was worried about her—this room was full of it. Scooting through a gap in the line I’d drawn, need demanded I help.

When Mom opened her mouth, I saw the problem immediately: a line of teeth pointed down into her bottom gums. The dentures on top were fine, but the bottom ones were upside down. Teeth-side down. So when Mom tried to chew, the top teeth pressed the bottom teeth into her guns.

“It’s easier to get forgiveness than permission.” In the course of our caregiving days, Dad and I had come to believe in that principle. Heartily. So despite my promise to “just look,” I reached into Mom’s mouth and grabbed the bottom teeth. Immediately, her torso drooped, in relief, I’m sure. Mine stiffened as I realized what I held in my hand. Without looking too hard or thinking too long, I turned the dentures over and dropped them, right side up, back into Mom’s mouth.

This time her smile covered every feature of her face. Dad sputtered his relief, though he simply couldn’t understand how in the world Mom had managed to engineer a way to bite herself. “Oh, I know she didn’t mean to do it,” he said as I washed my hands. “But she did it! No wonder she couldn’t eat!”

A still greater wonder to him was the fact that he had looked in her mouth but hadn’t seen anything wrong. I waited till later in the afternoon to tell him that, in a case like this, he must call me to check things out. His macular degeneration made us unable to trust anything he saw, or didn’t see.

Once the problem was solved, we had a good laugh about it. Mom ate all her toast and wanted more, so Dad made more and we all had some.

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Need. It’s always there for caregivers. It’s the enemy we fight and the reason we keep returning to the battlefield.

And there is another, more personal way need can help caregivers.  Surely we have needs of our own. We crave rest to battle exhaustion. Relaxation to replace stress. Certainty in the face of confusion. Hope to overcome despair.

How do our own needs serve us? They remind us to look up. They turn us to the Lord, the one Source of all power and strength and courage and mercy. Our needs teach us to ask for what we need, and to be grateful for what we receive.

Then your light will break forth like the dawn, and your healing will quickly appear; then your righteousness will go before you, and the glory of the Lord will be your rear guard. Then you will call, and the Lord will answer; you will cry for help, and he will say: Here am I (Isaiah 58:8-9 NIV).

Lord, remind us to look to You every day and night. You alone can give us the strength, wisdom, and perseverance to meet the needs of our loved ones. You alone can comfort, strengthen, and encourage us. You are All in all. We praise You. We thank You.

 

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)

 

Alzheimer’s and Depression: A Cautionary Tale

We’ve been looking at the “What-If’s” of caring for someone with Alzheimer’s: the questions that pop up in our minds without warning or provocation, daring us to answer them immediately lest we move into the future unprepared.  But we’re taking a slight detour in the last post and this one to consider at length a big “what-if” in the world of Alzheimer’s: what if the person I’m caring for has depression in addition to Alzheimer’s?

As we discussed in the last post, 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.” Speaking for myself, the fact that 40 percent of people diagnosed with Alzheimer’s become depressed doesn’t surprise me. But at a presentation given by well-known geriatric psychiatrist Dr. David Crumpacker, I heard something that did surprise me.

“Depression is never normal,” Dr. Crumpacker stated. Not even for someone with Alzheimer’s? No, not even for someone with Alzheimer’s.

The importance of this fact is underlined by two other facts:

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

As I noted in the last post, that’s information caregivers can act on. I suspected my mom had depression, but I didn’t push hard enough for diagnosis and treatment. 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. As promised, here’s the story of how I learned about the effects of depression on someone with Alzheimer’s. 

After I heard Dr. Crumpacker speak about the impact of depression on someone with Alzheimer’s, my father and I made an appointment for Mom to see him. On the day of the appointment, Mom refused to go.

“No doctor but mine!” she shouted at me, punctuating the declaration by throwing a chair my way.

The doctor Mom was referring to was the primary care physician at the Senior Medical Center in the small suburb of Dallas where they lived. Dad and I had been totally unable to get this man to listen to us regarding Mom’s increasing anger, lack of cooperation, and even aggression. Instead of considering the information Dad and I provided, the doctor watched Mom. She smiled in his office. Chatted with him. Answered questions politely. Even promised to stop smoking.

Later, at home, Dad and I looked at each other through the smoke of Mom’s ever-lit cigarette. The situation seemed impossible: Mom refused to see the doctor who could help her, while the doctor she would see would not even acknowledge the problem.

This impasse lasted a few weeks. With no help for the symptoms of depression, Mom grew angrier. And Dad…Dad was like a soldier forced to march in place while the enemy closed in on Mom. He was desperate to help her but growing weary of fighting with love his only weapon.

As for me, I was useless. I should have done whatever was necessary to make the doctor see the truth of Mom’s symptoms. Maybe she’d yell, even throw another chair—but so what? Isn’t that what I wanted him to see? Isn’t that what he needed to see?

But no. I was accommodating, as usual. To Mom, who was, after all, unfailingly cooperative in the doctor’s office.  To Dad, who was, after all, relieved to hear a doctor who spoke as though Mom was fine, except for maybe a little “fatigue.” And to the doctor, who was, after all, the expert in Mom’s care. Right?

What I failed to accommodate, of course, was the truth. The truth is that Mom was depressed, severely so, and while Dad, the doctor, and I ignored it, she could not.

Mom never wore hats. So the morning I walked into their house and saw her sitting at the table wearing a perky red ball cap, my mind shifted immediately to high alert mode. Dad’s almost shouted question, “How do you like your mother’s hat?” did nothing to allay my anxiety.

Mom didn’t like to wear hats, but she did like her hair short. A “pixie” style, I think it’s called. But lately she’d refused to go to her hair stylist. The longer her hair grew, the more loudly she complained…and the more determined she was not to go anywhere to have it cut. Yes, I offered to cut it, and was lucky not to have to dodge a chair. But now I wondered if maybe Dad had taken her to the barber shop. And bought her a hat to cover up a bad job.

Now I said, “Well, I like your hat.” Still accommodating. “Where did you get it?”

“Your father gave it to me,” Mom said. Then, with a grand flourish she waved her arm over her head, knocking off the cap.

I gasped. Mom’s head looked a dog’s chew toy with most of the fur chewed off. Her hair was gone. Well, most of it was gone. Grey-brown tufts stuck out here and there, their edges uneven, hacked. The jagged lines of surviving hair ran like old rick-rack trim across her poor, mottled scalp.

When I had recovered enough to take in information, Dad told me that, the day before, he’d gotten tired of Mom’s complaining about her hair. So he left the room. He went out to his garage, his refuge, for some quiet time. Twenty minutes later, when he came back inside, Mom wasn’t at the table. She wasn’t in the living room. The bathroom door was closed, but he rushed in anyway.

Mom was standing at the mirror, scissors in her hand. Long-bladed utility shears, Dad called them. “Hair was everywhere. Everywhere,” he said.

Though Dad assured me he’d already checked, I had to look again. How could Mom have done such damage without slicing her scalp? But no cuts, large or small. No blood. It was a miracle.

Two weeks later, the three of us walked in to Mom’s doctor’s appointment as usual. She had long since thrown the ball cap away, refusing to wear anything on her head.

This time when the doctor came in, there was no cheery “Well how are you, Mrs. Bailey?” Instead his chin dropped and his mouth hung open. He never said a word to Mom, turning, instead,  to the other side of the room, where Dad and I sat. “Did she do this?” he asked.

I looked at Dad. Dad looked at the doctor. “Yes, sir. She did.”

That day we left the office with an appointment for Mom to see the geriatric psychiatrist who visited the senior clinic once a month. Another miracle: his next visit was only days away. Because of what was labelled her “self-destructive tendencies,” Mom was moved into the first slot on his list of patients.

Mom wasn’t a candidate for talk therapy, but the medication the psychiatrist prescribed began to improve her mood much faster than expected. The little white pills had no effect on the Alzheimer’s, but they released Mom from much of the anxiety and anger that had taken over her life. They helped her say “yes” more often, cooperate more often, smile more often. At last the good days began to outnumber the difficult ones, and Mom and Dad had more long, relaxed evenings, a mainstay of their 50+ year marriage. Of course Alzheimer’s continued to make its presence felt, but with Mom more relaxed—just plain happier—Dad and I found renewed strength and hope to fight it for her.

Alzheimer’s is never easy. But maybe it doesn’t have to be as difficult as it is now for you and the person you care for. If you suspect your loved one may be depressed. I urge you to check it out. Remember: caregiving is mostly about keeping our loved ones safe and comfortable. I saw for myself that my mother’s depression was treatable. I saw how different she was after treatment: more relaxed, more upbeat, more comfortable. And safer.

“Depression is never normal.” Check it out. Please.

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As a shepherd looks after his scattered flock when he is with them, so will I look after my sheep. I will rescue them from all the places where they were scattered on a day of clouds and darkness.  (Ezekiel 34:12 NIV)

Father, help us as we try to shepherd our loved ones. You are the one Good Shepherd. Teach us, please, to see as You see, care as You care, love as You love.

 

 

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.

 

The What Ifs of Alzheimer’s: What If I Can’t Be the Caregiver ?

Anxiety is a daunting enemy for caregivers. In the last post (What IF…?) we looked at the damage “What if…” questions can do to a caregiver: dousing confidence and creativity, draining energy, replacing patience with panic. We saw that we can’t just push those thoughts out of our heads. Instead, we must replace them with other thoughts. Useful thoughts.

So…what if something happens to keep me from caring for my loved one with Alzheimer’s? What if, for some reason, for some amount of time, I have to be out of the picture? What would I do?

Is that a question that might keep you up at night? Or are you prepared with an answer?

My plan for dealing with this what-if was simple: I just ignored it. In the split second I considered it, I saw no possibilities. Not one.

There were very few people I would have been comfortable asking to fill in for me, and I was sure none of them would be available. Because of work. Or because they didn’t know Mom and would not like being responsible for her. Or because they did know Mom and would not like being responsible for her. The bigger issue, however, was that Dad had told me from the beginning he wouldn’t allow anyone in to help with Mom except me or my sister. So, believing I had no options, I chose to put that what-if out of my head. I told myself it would never happen.

Not a good strategy. First, the question wouldn’t go out of my head. And then, it did happen. 

The crisis came with no warning, and it developed fast. One day Dad complained of feeling “bad.” Two or three days later, he was hospitalized for an infection that might have taken his life. Someone needed to be with him to interface with doctors, receive test results, etc. But someone also needed to be with Mom, day and night.

What I did:     I called my sister. She was able to take ten days off from her job to be with Mom during the day. I hadn’t even considered this an option. Her job was full of decision-making, travel, supervision, yet with very little notice she was able to leave it for almost two weeks. I stayed at the hospital during the day and spent nights with Mom. When Dad came home, my sister went back to work. And things returned to “normal” with me and Mom and Dad.

What I didn’t do:     Even after this emergency, I made no plans for a “next time.” I persisted in believing what was clearly not true: I had to be the one and only caregiver for Mom.

What I could have done:     This crisis could have been the beginning of a grand improvement in my caregiving journey with Mom. During the time Dad was out of the house, I could have brought in a professional caregiver for Mom. With my sister there for the first couple of days, then returning occasionally to check on how things were going, the ten days would have allowed a new caregiver to get used to Mom. And Mom would’ve had the opportunity to depend on someone other than me or Dad or my sister.  Another possibility: as it turned out, Dad had to have nurses come to the house to check on him for a few months after he left the hospital. In spite of his long-held belief that having “strangers” in the house would make him feel “invaded,” he made friends with the nurses and actually enjoyed their company. If I had hired a part-time caregiver during his hospitalization, someone to help with Mom’s exercise and personal hygiene, by the time Dad got home, a new rhythm might have been established. Mom’s care would actually have improved, and Dad might have had another friend.

 

Three things to remember:

You always have options!

My worst mistake was thinking there was no solution to the problem. That one thought – “I have no choice here” – paralyzed me. I couldn’t convince my mind to brain-storm a solution for an insoluble problem. But the truth is I did have options! So do you. You always have options. [You can do this.]

Fight for what you know is best.

My father thought he could care for Mom alone. He couldn’t. He thought he knew what was best for her. He didn’t. But—to Mom’s detriment—I didn’t challenge him. I should have made him face the truth; at least I should have tried. You are the one who must see clearly and speak truthfully. It takes strength, but you will have it. [Trust yourself.]

Take advantage now of all the help available to you.

I did a good job of lying to myself, telling myself that, most days, I really didn’t need any help. I was wrong. You can always use help. The sooner you begin to look for it, the more you’ll find. The sooner you begin to ask, the easier it will be. And if you get help even when you think you don’t need it, two good things will follow: your job will be easier now, and the help will be more readily available in an emergency. [You’re never alone.]

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^“But the Helper, the Holy Spirit, whom the Father will send in My name, He will teach you all things, and bring to your remembrance all things that I said to you. Peace I leave with you, My peace I give to you; not as the world gives do I give to you. Let not your heart be troubled, neither let it be afraid.”               (John 14:26-27   NKJV)

LORD Jesus, in Your might, You help us. In Your love, You comfort us. We ask that in Your mercy, You care for our loved ones, and in Your wisdom, show us how to protect them until they come home to You.

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.

 

 

 

 

 

 

Exquisite

Caregivers recognize each other.

Yes, each caregiving path is unique. As different as each caregiver and the person he or she cares for, as different as their environment and lifestyle and family or lack of family—as different as each of our lives is different.

But unique as we are, caregivers recognize each other. With a pang of empathy and immediate respect, we recognize each other.

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

Though the room was full, the tables were arranged so everyone had plenty of elbow room. But when I felt a touch on my shoulder, I realized I was just a bit in the way of an older man guiding his wife’s (my assumption) wheelchair across the thick carpet.

“Oh, excuse me!” I said. I adjusted my chair, noting as I did so the gentleman’s well-polished wingtip shoes. (Wingtips always remind me of my father.)

Without making eye contact, the man nodded and moved on. As he walked away, I noted his carefully trimmed silver hair and handsome dark blue suit, and wished I had gotten a longer look at the lady in the chair. Then, just about the time I decided they must have been leaving the restaurant, I saw them coming back in our direction. Their table for two was just beyond us. I made certain they had a clear path this time and took the opportunity to see the lady who was dining with this debonair man.

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

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

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

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

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

Later, at home, I surrendered to thoughts I had pushed away as we celebrated.

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

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

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

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

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

 

Words: A Matter of Timing

As valuable as words may be in maintaining a calm attitude in those with Alzheimer’s, words can also make a bad situation worse.

In the beginning, I was certain I could make everything ok for Mom: explain away her fears, talk her down from imaginary ledges, even spin reality to suit her mercurial moods. It was a matter, I reckoned,of being kind instead of threatening and accommodating instead of bossy.

 

But, to put it succinctly, I was wrong. My explaining and talking and spinning did little to help Mom find peace once she’d lost it. On the day she responded to my encouraging talk by throwing a chair in my direction, I learned that persuasion was not a caregiving strategy I should rely on.

As in many issues related to caregiving, when it comes to using words, timing is all-important. For example, quiet small talk about familiar things could distract Mom while we sat in a doctor’s waiting room. But on a difficult day, if Mom said no to leaving for an appointment, trying to persuade her did more harm than good. My words were very likely to turn her flat refusal into an all-out battle. A physical one. Mom couldn’t throw that chair hard enough to hurt me, but she did persuade me to leave her alone about going to the doctor.

Another example: Sometimes Mom would sleep late, get up without our help, and skip the bathroom stop that was so critical to getting a good start on the day. I would gently take her elbow to lead her to the bathroom, but on some days she simply refused to go. She planted her feet, jerked her arm away from me, and said “No” in a voice that threatened to wilt the leaves on the ivy plants in the window.

So I’d try a different approach. In dread of a loud, angry day, I became too determined to make Mom happy. I’d offer juice, toast, a bath robe to keep her warm. Maybe a cup of tea?

In effect, I was only increasing her anger. My words-words-words, though meant to accommodate her wishes, were actually putting more pressure on her. Her confusion expressed itself in still more anger. Often Mom left the room to sit alone on the couch. And I was left to contemplate my failure.

It took a while to shut me up, but gradually, as all caregivers do, I learned from experience. I found that using words to keep Mom comfortable was usually effective. But using words to make Mom happy when she wasn’t? No. To talk her into doing something she didn’t want to do? No. To make her believe I was doing what was best for her? No. At those times, words were worse than ineffective; they were fuel for Mom’s flame.

The solution turned out to be simple: I did the opposite of talking. When Mom said no, I backed off. I waited. And then I tried again. Beyond checking on her every few minutes with a smile but few words, I left her alone. I prayed she would find the kind of comfort she most craved, and I would sense any of her unspoken needs. When I went back to her, I always brought up the troublesome subject as if it were the first time we’d talked about it. Sometimes it took a while, but, with few exceptions, Mom eventually agreed to what we needed to do.

Yes, a lot of time could pass while I waited for Mom. Still, even if it made us late to an appointment, waiting was my only option. I would never use physical force, unless she was in danger. I did learn to make appointments later in the day. And I didn’t hesitate to reschedule if that became necessary.

Two more pieces of advice from one caregiver to another: In time, I ceased worrying about other people so much—their schedules, what they might think about how Mom looked or acted. And I gave up trying to keep everyone happy. It was never a good idea in the first place.

Doing what was necessary to keep Mom in her life as long as possible became my major goal. With that goal in mind, I did my best to put my fear and dread away. We tend to create what we focus on; I made myself focus on peace and expect the best.

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And the Word became flesh and dwelt among us, and we beheld His glory, the glory as of the only begotten of the Father, full of grace and truth.  (John 1:14  NKJV)

Father, we thank you for sending Your Word, Jesus, to redeem us. Through Him, we accept Your constant companionship. May we use Your grace and Your truth to help our loved ones through this earthly life until they behold Your glory their heavenly home.