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.

********

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.

 

********

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.

********

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.

********

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)

 

Advertisement

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.

******************************

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.

In the Blink of An Eye

Most caregivers discover that’s just how quickly moods can change. In the proverbial blink of an eye, those with Alzheimer’s or other forms of dementia can go from sullen and uncooperative to relaxed and quiet. Just as quickly, conversation and smiles may become shouting and restlessness. Obviously, it’s not too challenging for caregivers to keep up with positive change. But how do we shift gears when a positive mood suddenly becomes negative?

• Listen
  

After a morning of easy talk, easy smiles, easy cooperation, Mom scowls, first at me, then at the plate I’ve just set before her. I study the plate but find nothing that might have upset her.

“It’s just lunch, Mom,” I tell her.

No doubt she can’t hear my upbeat, positive voice over her own shouting. “What is that? I don’t want it. I don’t eat here.”

I’ve learned to pay close attention to what Mom says when she’s angry. The angrier she is, the harder I listen.  Sometimes her words tell me nothing; often her shouting contains no words. But this time she’s hinted at three possible causes for her anger. I address them one by one.

“This is your lunch, Mom. It’s pimento cheese, one of your fav—“

 “No! No, no, no!”

“OK. If you don’t want it right now, I’ll wrap it up and put it away for later.”

No shouting this time. She lifts one bare foot and kicks my shin.

I back away. “If you don’t eat here, where would you like to eat?”

 “At home. With Mama. Take me home!”

 An impossible request. Now what?

•  Stay calm. And try to take your feelings out of the situation.

I take the plate away, sit with her at the table, and do my best to wipe my face clean of emotion. If I’m sympathetic, she often gets the wrong message. In this case, she might read my attempt to comfort her as “OK, I’ll take you home now.” But if I look stern or tell her what to do, her anger escalates. So I try to erase all emotion from my voice, too. “I know you want to go home, Mom, and we will. Soon. But right now we have work to do here.”

More shouting. “No, no, no, no!”

• Try distraction.

I point out the window. “Look Mom! It’s that squirrel you saw yesterday! I hope he doesn’t go to the garden and eat another tomato off the vine.”

Without even turning her head, she says, “Take me home now.”

I try other distractions: folding pillowcases, taking a walk, a cup of tea. Each activity is met with a loud “No!”

• If the situation allows it, wait until the storm passes.

So we sit. Or sometimes we walk; if Mom gets out of her chair, I follow her. This always makes her even more furious, but safety requires it. Eventually the shouting appears to be too much of an effort for her. She sits without a word. Is she ok now? Sometimes, but usually she’s still angry, glaring at me. Trying to keep my face neutral, I watch her and say nothing. I’ve found Mom can get angry in an instant, or sad in an instant, but happy takes longer.  I’ll have to be patient. Wait for her to give me the next cue. It could take 5 minutes or it might take an hour or more. But if I watch and listen, I’ll catch her cue.

This time it’s hunger. Mom glances toward the kitchen a couple of times, so I get up, retrieve her sandwich, and set it in front of her again. I smile, but don’t say anything. The quiet calms her, I think, and her brain can rest instead of trying to make sense of what I say. If she wants the sandwich, she’ll eat it. If not, she’ll leave it alone or push it away.

In this instance, I wasn’t able to give Mom what she wanted. All I could do was stay close by and let her anger play itself out in a safe place. I had listened; because her request was impossible to grant, I tried to distract her with other activities; but at the end, I could only wait with her.

• Sometimes you can’t wait for the mood to pass.

As difficult as it is when we can’t do what our loved ones want, it’s far more difficult when the option to wait is also taken away. For example, when Mom stops in the middle of the street, saying she’s tired, she wants to sit down right here, I don’t have the option of waiting until she decides to take another three or four steps to the curb. I must get her moving right away, and that means I have to take physical control. Keeping up a steady stream of calm conversation about anything at all, I stand with my shoulder behind her shoulder blade, put one arm around her waist, and hold her elbow with my other hand. I’m bigger than she is, so when I start walking, slowly, my body pushes her’s along. The element of surprise is also in my favor.

Of course we would never knowingly ask our loved ones to do something they’re too weak to do, but if we’re in a spot where they could be injured and they suddenly decide not to cooperate any more, we must have a plan to get them to safety, whether they help us do so or not.

It’s another sad truth caregivers must accept: we can’t keep those we’re caring for from experiencing feelings of anger, fear, sadness, suspicion. But having accepted that, we must also understand that there are ways to help them deal with those feelings. Focusing on what we can do keeps our own feelings more positive, our minds more creative, and our spirits attuned to gratitude instead of dread and fear.

Even to your old age and gray hairs I am He, I am He who will sustain you. I have made you and I will carry you; I will sustain you and I will rescue you (Isaiah 46:4 NIV).

Give us patience and strength, Father, as we care for our loved ones. We watch with faith and hope as You fulfill Your promise to carry and sustain them. Please give us wisdom as we work with You to rescue them from the pain of dementia.

The Small Stuff — Part II

Last week’s post began with a statement of the obvious: Alzheimer’s changes almost everything about the daily lives of those who live with it and those who care for them.

The temptation is to assume that changes in small matters have less impact on quality of life than more dramatic ones do. For example, it’s easy to imagine that the inability to recall the name of a spouse will take more of a toll on a loved one with Alzheimer’s than, say, a sudden aversion to a hairdresser.

Assumptions can be dangerous.

Caregivers have the burden of watching, closely, in any circumstance. Matters that appear trivial to us may be a source of extreme anxiety, or even injury, to a loved one with Alzheimer’s.

**************************

When I arrived this morning, Mom sat sipping tea with a floppy brown hat on her head. Mom doesn’t wear hats. What was this about?

Her explanation, “Daddy got this for me,” didn’t tell me much, so I looked to Dad.

“Your mother asked me how to cover up her head, so I got her one of my hats,” he said.  Then, turning to Mom, he fairly shouted, “Show Kathleen your hair.”

Mom looked back at him. Said nothing. I expected Dad’s shouting would make her angry, but no. Her face held no expression at all.

“Show Kathleen your hair,” Dad repeated, “—what’s left of it.”

Now she remembered. Sadness wandered across Mom’s face and she laid her hand gently on top of the hat. “Oh, no, Daddy. No. My hair is ruined.”

“I’ll say it is!” Dad was shouting again. “You cut it all off!”

Mom’s anger struck like lightning. “Look, Child,” she said. “Just look what Ima Jean did to me!”

She lifted the hat for a second, then jerked it back down. But what I saw in those seconds explained Dad’s anger. It was born of fear.  Mom hadn’t cut her hair—she hacked it.

As I stared, Mom pulled the hat off again and threw it across the room.  In most places her hair was about half an inch long. In random patches, tufts of maybe an inch stuck out or cowered against her head. Her scalp was visible in long gashes and at odd angles. There was no hair at all around her face—nothing across her forehead, nothing around her ears.

I stood and leaned over her, looking for cuts on her head and neck. How could she have gotten the hair so short without catching her scalp in the scissors? But I saw no blood.

“Ima Jean? Ima Jean had nothing to do with this!” Dad’s words still bounced around the room. “You did this!”

Gradually the story came out. When I left their house yesterday, Mom and Dad were talking—arguing—about her hair. Dad went outside to water the plants, get the mail, fill the bird-feeder. To escape, I suppose. When he came back inside, Mom had left the table.

Dad found her in the bathroom, standing in front of the mirror. I could imagine what he must have seen, but he told me anyway. A massacre. Hair in chunks on the counter, the floor, clinging to her clothes. And Mom, wild with the scissors, grabbing at her head, trying to find more strands to lift up and cut off. Miraculously, neither of them was hurt as Dad disarmed her.

The lamp at my bedside doesn’t relieve the darkness that fills me now. I’ve told the story to my husband. I’ve tried to contact my sister to tell her. I think if I tell enough people, the impact will lessen. I’ll forget the horror and begin to concentrate on what I can do to prevent anything like this from happening again.

But sitting here in bed, a pillow at my back, my hands clutching each other atop an unopened book, the horror remains. My fault, I tell myself. My fault. I know how Mom is about her hair. I should have seen this coming. My fault.

Maybe tomorrow I’ll believe my husband’s words. “No one could guess your mom would do this. It’s no one’s fault. No one’s. Your mom is sick. This is only another symptom. A sign that she can’t be left alone, even for a few minutes. Now you know. Your dad knows. Your mom wasn’t hurt. And it wasn’t your fault.”

Maybe tomorrow I’ll believe him.

Lord, free me from this suffocating guilt. Let me cry it out tonight and make a new start tomorrow. Thank you, Father, for protecting Mom while I learn how to be a caregiver.

This is what the Lord says: “Restrain your voice from weeping and your eyes from tears, for your work will be rewarded,” declares the Lord.   (Jeremiah 31:15   NIV)

The Small Stuff — Part I

Alzheimer’s changes almost everything.

Caregivers can see the biggest changes easily. It’s impossible to miss the decline of abilities like making conversation, performing productive work, buttoning a shirt.

Other changes can sneak up on us. And, though they may appear small, they may eventually cause serious problems.

That simple knowledge can help us anticipate obstacles, give us more time to prepare for them, and thereby keep our loved ones safer.

***************************

For Mom, it was her hair.

She likes it short. For over 25 years, she’s gone to the same little shop to see the same friendly hairdresser for the same simple cut and style. When Mom stopped driving a couple of years ago, Dad began taking her. He’d drop her off, go home, wait for her to call, and pick her up.

A few weeks ago, Dad waited an unusually long time for Mom’s call. She was outside the shop when he arrived. As the car door slammed shut, she began shouting. “I will never come back here. Ima Jean said I didn’t even have an appointment. She made me wait until she finished three other women before she even started my hair!”

Dad’s question as to whether Mom had actually made an appointment only made her angrier, he told me later.  Tiny alarms went off in my head. Should I have made the appointments? Should I have gone with her? Next time, I told myself. Next time I’ll go.

Next time didn’t come. Though Mom forgot many things in the next few weeks, she didn’t forget her promise. When I suggested we call to schedule a haircut, she glared at me. “I will never,” she repeated, “go back to Ima Jean.”

Neither would she agree to go to any other hairdresser. Persuasion didn’t work. My invitation to take her to lunch after a quick trip to my hairdresser didn’t work. Neither Mom nor Dad would agree to have someone come to the house to do Mom’s hair.

While I tried to come up with other ideas, Mom’s hair kept growing. I was lucky if she allowed me to wash it. When it brushed the back of her neck, Mom complained. When it touched the top of her collar, she raged, long, loud, and often. But just as long and loud and often, she refused to let anyone cut it.

The problem was on my mind again this morning. The answer came as I drove into my parents’ driveway: I can cut Mom’s hair. I’m no stylist, but surely anything will be better than the shaggy locks that so infuriate Mom. Why didn’t it occur to me before today? No matter. I walked into Dad’s cluttered kitchen certain I had come up with the perfect solution, for now and for the future.

Mom was dressed and drinking tea with Dad at the table, which would have been a happy sight except for the floppy brown hat sitting on Mom’s head.  Mom never wears hats.

I fixed my own tea, making small talk, asking questions Mom didn’t answer. Usually that means she’s angry, but today she didn’t seem so. She just sat with a smile that struck me as – what?  Sad?

“How do you like your mother’s hat?”  Dad asked. The light words he spoke didn’t match the heavy look in his eyes. His question filled every corner of the room with tension.

“Well, yes!” I grinned, hoping bright teeth would cover dark foreboding. “That was a surprise this morning!”

Now Mom’s face brightened a bit. “Daddy got this for me,” she said, reaching up to touch the brim of the hat. She shifted in her chair, almost stood, then sat again.

Even now, in the quiet of my bedroom, I have trouble believing what I heard and saw in the next minutes. Two things, however, have fixed themselves—immediate, solid, permanent—in my mind.

One burns: I must watch Mom closer, even in the “little things.” I must weigh her needs by her standards, not mine.

The other soothes: I am not the only one looking out for Mom. The Lord is watching. Always. Protecting. Always.

Lord, help me fight the guilt that’s smothering me now. But more, immeasurably more, thank You for Your care for Mom. And please show me how to learn more about her needs and about keeping her safe.

“Though the mountains be shaken and the hills be removed, yet my unfailing love for you will not be shaken…” says the Lord, who has compassion on you.   (Isaiah 54:10   NIV)

Lost, but Not Alone

“Be strong and courageous.  Do not be terrified; do not be discouraged, for the Lord your God will be with you wherever you go. ”      ( Joshua 1:9)

When we left the motel this morning, Mom was excited to visit Mark. But somewhere between there and Mark’s apartment, she changed her mind. I guess. All I’m sure of right now is that Mom doesn’t know where we are, and wherever it is, she doesn’t want to be here.  

I look at her perched on the edge of the brown hand-me-down sofa and thank the Lord Mark’s still at work. Then I go over the last few hours one more time, trying to understand.

When we turned into the parking lot of the apartment a few hours ago, Mom was dozing.  “We’re at Mark’s house!” I sang out. 

Her response stunned me. She spit out the words like acid. “Where are we? Why did we come here? Take me home. Right now!”

Panic rose in my throat as all that I had questioned the night before came roaring back. What was this?  

Somehow Dad coaxed Mom out of the car and into the apartment. Separately and together we reminded her we came to Colorado to see Mark.  In reply, she kicked off her shoes and shouted, “Turn on the TV!  Sit down and be quiet!” 

Following Dad’s lead, I obeyed. We sat silent and still, like rabbits in a thicket waiting for the fox to pounce.   

After half an hour, just as the full absurdity of the situation hit me, Mom announced she was going for a walk. Alone. Barefoot. In a strange neighborhood.

What happened next runs through my mind like a horror movie. Dad standing between Mom and the door.  Her mouth open, yelling; her hands beating at his face and chest.  Dad grasping her shoulders, holding her at arm’s length.  Me beside them, pleading, “Stop, Mom!  Stop! That’s Dad!”

My father eventually maneuvered her to the sofa.  Her body still taut with rage, she fell into the cushions, landing slow and clumsy, like a tossed log.

No matter how many times I go over the events, they won’t add up to anything rational.

At last Mom lays her head on the arm of the sofa. Thank You, Lord; she’s asleep. Still, Dad won’t talk to me, won’t even look my way. He sits in a worn leather recliner, staring at his knees. Dead calm rules the room.

Is this real? My mother yelling at my father? Hitting him? Never. But she did. Maybe she didn’t realize it was Dad? Finally I say it in my mind: Alzheimer’s. 

Is this Alzheimer’s?

When Mark gets home, Mom wakes up.  My heart cringes, then expands with joy at the miracle I’m seeing. Mom’s smiling, calling Mark by name. Apparently the tempest has passed. Dad’s face can scarcely contain his happiness. 

So we eat.  We laugh.  Just for tonight, I pretend nothing happened.

I’ll deal with tomorrow tomorrow.   

God, my Father, I know it was Your power that stilled the storm in my mother’s mind.  Your compassion gave us the comfort of familiar pleasures.  I trust You to lead us forward, one day at a time, down this unknown road we travel.  You know me, Lord.  Don’t let me race ahead toward panic.  Remind me to let You go first.  I will follow wherever You lead.