Hard of Hearing

Do they hear? Do they understand?

As we care for loved ones with Alzheimer’s, we’re desperate for them to feel our love, to be steadied by it, to feel safer because of it. But do they hear? Do they understand?

Sometimes we find it almost as difficult to get through to relatives and friends. Their understanding of what it’s like to live with Alzheimer’s can offer us both emotional comfort and practical help. But as they try to protect themselves from the pain that comes with a close-up view of Alzheimer’s, do they really hear and understand?

Keeping our fear and frustration and pain bottled up inside can damage our own health, both mental and physical.

The first step is knowing we need to speak up. Then it’s up to us to make certain someone is listening—someone we trust, someone who will make the effort to understand. If we can’t find such a person in our circle of friends or family, we can go to an Alzheimer’s support group.

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Ever felt like yelling “Is anybody out there?”

Yes, I see people, I talk to them, but are they listening?

Dad, for instance. He hears only what he wants to hear. If I say “Mom took her pills just fine! No problem,” I’ll usually get a grin from him. That smile tells me he got the message. But a few days ago, I told him “Dad, we must get disposable underwear for Mom. The regular ones won’t work anymore.” No response. I waited, but nothing. He neither agreed nor disagreed. It’s like his brain just refused to take in my words. Why? He knows Mom will resist the change. So it doesn’t matter how necessary the underwear is. Dad won’t hear of anything that will upset Mom.

Mom’s doctor, it would seem, is also deaf to my voice. I’ve spoken to him about Mom’s black moods. I backed up that conversation with written descriptions of her behavior. “She tries to hit other shoppers with her cart at the grocery store,” I wrote. “She growls at little children and smiles when they cry. At home, she slams her fist against the wall or the furniture. What if she starts hitting my father instead?”

I expected the doctor to address our concerns when we brought Mom in for her appointment. But nothing. No talk of depression or extreme moodiness, no questions to Mom about symptoms, no discussion with me and Dad about possible causes. Nothing at all until the very end of the appointment, when the doctor finally asked, “Mrs. Bailey, are you depressed?”

Mom smiled. “Oh, no, Doctor.”

He smiled back at her, said he’d see us in four months, and left the room.

Easiest to explain but hardest to bear is Mom’s faulty hearing. If I tell her “I love you” and she hears, and she knows what that means, wouldn’t she say “I love you” back? Or smile? Wouldn’t I at least see some warmth in her eyes? No. Alzheimer’s has robbed her of understanding and trust. And robbed me of the ability to erase the anger on her face or the fear I see in her eyes.

So I talk to You, Father. I listen for Your answers.

I pray as I buy the new disposables. You suggest I take all the old underwear out of Mom’s drawer and put these in their place. Yes! Having only the new kind to wear, and finding them just where she’s always found her underwear, might keep her from fighting us so hard.

I ask You for patience and make another appointment with the doctor. You tell me I’ll have to speak up, make myself heard. Yes, I should have done that last time. I pray for courage for myself and enlightenment for the doctor. You remind me You’ll be there, with the doctor, with Mom, with all of us.

I confide in You, confess my pain that Mom can’t understand me. I ask for a miracle, and follow Your prompting to continue talking to her. On the good days, I remind her of happy times we had when I was a little girl–the funny expressions I used and the silly games we played. I tell her I love her and I’ll be right here for her, like she was there for me. I expect no response, so her sometimes-smile is always a surprise, a delight I can carry forward to other days. I know the smiles are Your gift, to Mom and to me.

Thank You, Father, for always hearing my prayers. Whether I’m complaining or praising, whining or rejoicing, You listen. When I can’t find the words to pray, You supply them. Your answer is always help and strength. May my words carry those gifts to others.

“But certainly God has heard me; He has attended to the voice of my prayer. Blessed be God, who has not turned away my prayer, nor His mercy from me.”  Ps. 66: 19-20  (NKJV)

Moving Forward

 It’s one of those days.

You know the kind? One of those days when—for no apparent reason—the world looks bleak. We wake up and something’s different. Some dial inside us that should be turned to high is stuck at low. We recognize the heaviness of heart and lack of motivation. Yet here is the day. We can move through it in survival mode, or we can live it. At least we can try.

The living is in the effort we expend. 

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Help. We give it. We need it. Some days more than others. 

My routine offers comfort. The water cooperates; I hear it bubbling. Steam fills the empty air with the strong scent of Earl Grey. I brew it longer. Darker. Add extra sugar with the milk. 

I open the blinds to sunshine I don’t feel, so I go out into it, carrying the flowered china mug, the special one I reserve for celebrations. Walking, sipping, I realize plants are still growing, the air is still morning-fragrant, the sky is still up, the earth—black soil and green grass—is still down.  

Strange to see the day, watch it unfold, without sensing its energy. But seeing is believing, I tell myself, and I feel myself agree.

Here is the day. Hard perhaps, but the one I am given. I can survive it or I can live it. Starting—that’s the hardest. So I lift my mug and celebrate this beginning. I thank the Lord who created water to boil and tea to brew and fragrant daylight and solid ground. I promise to make good use of them. 

“Move forward and see what happens.” My day. My effort. My choice. 

Thank You, Father, for reminding me once again that I do not have to face today, or any day, alone. You are light in darkness, power in weakness, comfort in sadness. May I claim Your promise for this day and use it to Your purpose and Your glory.  

“I lift up my eyes to the hills—where does my help come from? My help comes from the Lord, the Maker of heaven and earth. He will not let your foot slip—he who watches over you will not slumber….”  (Ps. 121:1-3  NIV)

Best Laid Plans

It’s great when caregivers have time to plan in advance for a challenging event. Although our plans don’t always work perfectly, thinking ahead helps us handle difficult times more calmly and effectively.

But Alzheimer’s has a way of blowing away our expectations. We plan for one set of obstacles and find we’re faced with others we never anticipated. What then? We simply do our best—that is, the best we can do at that moment .

New caregivers, take heart. Time and experience bring new skills. The more difficult situations we work ourselves through, the more we realize we can rely on our instincts and judgment. We find we can work for our loved ones with confidence, strength, and trust in a Wisdom far greater than our own.

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This trip with Mom to the doctor is a carefully orchestrated event.

First I made a plan, which, to my surprise, Dad readily agreed to. A few days before the appointment, we’d let the doctor know our concerns, not by telephone, but in writing.  I’d deliver the information to the nurse in person and ask her to have the doctor review it prior to Mom’s appointment.

We carried out the plan to the letter. A week ago, Dad gave me a sheet of yellow legal-size paper on which he had hand-printed a list of the issues that most trouble him: Mom’s confusion; her repeated questions; her frequent refusals to eat, bathe, take her medications. He also included her anger, saying that, although it’s usually directed toward him, it’s now occurring both at home and in public. He ended by expressing his opinion that Mom’s sadness and anger are indications she is depressed.

To Dad’s sheet I added a printout of a computer file I started soon after the Colorado trip. The file, titled simply “Mom,” contains descriptions of her bizarre behavior on that trip and documents how that behavior has intensified in the weeks since. Like Dad, I mentioned Mom’s hostility. I described how she slams her fist into the furniture at home and told of her more recent tendency to get angry with people she doesn’t even know. I included a description of how she aims her shopping cart at other shoppers in the grocery store, noting she hasn’t hurt anyone, but only because I’ve intervened. I mentioned her incontinence, saying I don’t know whether she’s no longer able to tell when she needs to go to the bathroom or simply chooses not to go.

Four days ago, I met with the nurse at the geriatric clinic. I gave her the envelope containing our notes and requested she have Mom’s doctor review the information before her appointment. The nurse assured me she would place the notes in Mom’s file.

Now, as I sit with Mom in the waiting room, Mission accomplished, I think. The facts are on the examining table, so to speak, so I’m sure we’ll get help.

Finally Mom’s name is called. On our way down the hall, we stop for her to be weighed. She’s all smiles as she steps onto the scales and then chats about the weather with the nurse who takes her pulse, temperature, and blood pressure.

When the doctor enters, Mom greets him with another wide smile, which he returns. Is that surprise I see in his eyes? “No need to get up on the table,” he says.  “We can do this right here in your chair.” 

With scarcely a glance to Dad and me, he listens to Mom’s heart and lungs. In the next couple of minutes he educates her on the value of exercise and she politely agrees to stop smoking. He mentions nothing about the notes I delivered, but I see the corner of a piece of yellow paper sticking out of the file beside him on a desk. I wait.

Finally he opens the file. After flipping through the pages stacked inside, he at last takes action on the information Dad and I provided…with a five-word question to Mom. “Mrs. Bailey, are you depressed?”

Mom looks at Dad, not the doctor. “Depressed? Oh, no. I’m fine. We’re fine, aren’t we, Daddy?”

Patting Mom’s shoulder, the doctor answers, “Good! See you in four months.”

Is that all? I want to scream. Is that all? Will you just watch for ten minutes, see Mom’s smile, hear her words, and dismiss the experience of the people who live with her all day every day? Is that all?

In the time it takes the doctor to gather his notes, turn to the door, grasp the knob, and turn it, my brain presents my choices.

Step up, speak out, make him listen. If Dad’s eyes blaze or he tries to interrupt, ignore him. If Mom gets upset, so much the better. The doctor can see it for himself. Isn’t that what you want?

No! Play it safe. Who knows what Mom might do if you make her angry? She might throw a chair, grab the needles, smash the equipment.  Just leave. Try again next time.

Silent, I watch the doctor walk through the doorway. I hear the door close behind him. I’ve chosen escape. Escape from the situation without doing anything to hurt Dad. Leave before the wild woman who lives in my mother’s body can make herself seen. 

Coward. I keep silent and we walk to the car. 

Until today I have utterly underestimated the extent of my father’s denial.  Mom’s confusion and questions, her anger and fear, the hitting and shouting and all her refusals of food and medication—all were apparently erased from Dad’s memory when she looked at him and said, “We’re fine, aren’t we, Daddy?”

His denial is maddening. And I’m incensed by the doctor’s casual “See you in four months.”  But I save most of the anger for myself. My fear infuriates me.

Four months. Four months. Next time I’ll be ready. I won’t rely on paper in a file. I won’t be intimidated by a man in a white coat. Four months from now, I’ll make myself heard.

Lord, I feel I’ve failed. I had the opportunity to get real help for my parents, and I let them down. I’m too ready to depend on someone else to see the hard facts and say the hard words. Remind me, Lord, to depend on You. I can do nothing without You and everything with You. Remind me, Lord, please: we can do it together.

“You will not have to fight this battle. Take up your positions; stand firm and see the deliverance the Lord will give you…. Do not be afraid; do not be discouraged. Go out to face them tomorrow, and the Lord will be with you.”   2 Chronicles 20:17 (NIV)

In Training: Bright Expectations

Fear makes our world dark. Sometimes the world of a caregiver is black with it.

For today, we fear the confusion, anger, and paranoia that are devouring our loved ones. When we think of tomorrow, we know it will bring only further decline. We wonder when it will come, what it will look like, how we will manage it. 

Fear can narrow our vision to the point where we actually create what we fear. We watch so hard for the next bad thing that bad is all we see. Discouragement is all we hear. Dread is all we feel.

Fear makes us weak, and weakness gives the victory to Alzheimer’s. But what if we get strong? What if we go into training, train ourselves to look for a bright spot every single day? Expect  that bright spot? Or two? Or three?

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Fear threatens us all—Mom, Dad, and me. We’re paralyzed by it, each in our own way.

Mom is afraid of people and situations that are born in her imagination and grow there to monstrous proportions. She tells us at least once a week about a man who comes to the door and tells her that, because the fence surrounding the back yard is a few inches into the neighbor’s property, the house my parents have lived in for 45 years will be repossessed.

“The fence is perfect, honey!” Dad tells her. “No one will take our house away.”

“Oh, you never believe me. He’ll be here soon. Maybe in a few minutes!” Mom’s eyes search the room. “Where’s the broom? I’ll beat him with the broom. You never do anything. I’ll beat him.”

She seems to satisfy herself that she has a plan. But we’ll hear about the man again in a few days. I move the broom to the garage just in case.

Dad fears Mom will leave him. Always aware he is powerless to stop the disease, he’s certain one day she won’t recognize him. His love for her won’t matter.

Already their conversations are shallow and repetitive.

“How are you feelin’ today, honey?” Dad will ask her.

“Fine, Daddy. I’m fine,” Mom answers. “And Charley is fine, too. He’s really fine.”

Charley is the black miniature poodle who is treated by both Mom and Dad as their third child. The only boy.

“Ole Charley needs to go to the vet for his rabies vaccination,” Dad mentions. His casual words are a mistake, causing Mom to ask again and again what rabies is and does Charley have it and when can we take him to the doctor.

“I don’t want to talk about anything any more,” Dad tells me later. “Everything I bring up scares her.” He puts his elbows on the table and bends his face down into his palms. Talking is all they have.

My fear is wide and deep. I know that, when we see the doctor, I must confront him with the truth about Mom’s mental status. But Dad wants me to be quiet. Maybe there’s no problem, he tells me. If there is, the doctor will discover it on his own. That kind of thinking is, I know, almost as irrational as some of the scenarios Mom comes up with.

I will do what I must do, but I fear Dad’s anger. Maybe he’ll tell me to go on, go home, don’t bother trying to help. Maybe he’ll be hurt because I didn’t trust him to know what’s best. I fear causing him more pain. I fear losing his love.

Mom is afraid of things that won’t happen. Dad’s afraid of things that will almost surely come to pass. I’m afraid I can’t rescue either of them, or even myself.

Fear paralyzes us all. And we let it.

Mom has no choice, but Dad and I allow fear to win. Dad and I have choices. Why don’t we see them?

The first choice we must make is to consciously break free of the narrow, dark tunnel of fear. How? Replace fearful thoughts with hopeful ones.

Joy is alive in this house.

I can broaden my vision.

I can focus on light, not darkness.

When I search, I can find something to smile about.

It won’t be easy at first. It will take deliberate effort. Maybe I’ll have to write down the positive statements, carry them with me so I’ll remember to think them. Maybe I’ll say them out loud—challenge Dad’s negative expectations as well.

I can’t change Alzheimer’s, but I can change my attitude toward living with it. With deliberate effort, I can focus on the positive, the sweet miracles that—even in the darkness of Alzheimer’s—play themselves out every day.

Miracles like the bird that pecked at the kitchen window this morning. Mom wasn’t happy about it. She glared at him. He glared back. She glared more, leaning slowly but relentlessly closer to the window, until her nose almost touched the glass.

Finally the bird had enough. He flew away.

When Mom turned from the window, we saw she hadn’t forgotten how to smile. With lips and eyes and a squaring of her shoulders, she celebrated her victory.

“Did you see that, Daddy?” she asked my father. “That bird won’t hurt you now. I scared it away.”

“You sure did!” Dad boomed. Then, more softly, “Thank you, honey.”

So. Right here, right now, we have a choice. As the hours of this day pass and moods change and change and change again, will we walk in the light of Mom’s triumph over the bird? Or will we allow ourselves to stumble back into the darkness of fear? The miracles are there; they will unfold for Mom whether we notice them or not. But we’ll see only what we’re looking for.

Why not watch for miracles?

Open our eyes, Lord, and feed our spirits. As we help our loved ones through each day, nourish us with concrete signs of Your gentle care. Give us strength to expect Your power, faith to watch Your miracles unfold, and joy as we thank You for these sweet signs of Your presence.

In the morning, O Lord, You hear my voice; in the morning I lay my requests before You and wait in expectation.  (Ps. 5:3  NIV)

Waiting in Confidence

Alzheimer’s is a waiting room.

Caregivers live there. Often we feel we are held hostage, helpless. We wait for the nothingness we know will come, watching for it but trying to keep it at bay. Our loved ones just wait—they don’t know for what. One day they won’t even care.

It’s hard to be in any waiting room. And harder still to see we have any power there.

But we do have power. We have options. We can sit in the pain and anticipate the inevitable or we can seize the moments given to us, wringing the beauty from each one. 

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Today we sit on blue upholstered chairs outside the doctor’s office. We were lucky to find three places; most of the chairs were full when we arrived.

Lots of people waiting. It’ll be a long afternoon. My mind goes by habit to the concerns of being in public with Mom.

Do these people look at her and decide I’m an unfit caregiver? Her hair is dirty and matted against her head. As usual. Her shirt is so wrinkled, it looks like she slept in it last night. (She did.) Her hands are folded in her lap, so her long, uneven fingernails take center stage. That light patch on her left pant leg is the skin of her knee showing through a hole in her favorite black slacks.

I watch for signs Mom is getting restless. I pray she doesn’t start pointing and talking about the other people in the room. If our wait is too long, she’ll just get up and walk out. And I can’t let her do that—it took us too long to get her here. But how will I stop her?

When Mom starts rocking in her chair, Dad stands. With his hands in his pockets, he paces, walking the length of the long narrow room in short but purposeful strides. Back and forth. Back and forth. He’s making me dizzy, so I stare at the floor. Mom’s shamrock tennis shoes—the only shoes she’ll wear—are camouflaged against the dingy carpet.

That’s how time passes in the waiting room. It’s hard to find value in it. We have to bring it here ourselves. A book to read, a letter to write, the internet on a cell phone, music through tiny earbuds—opportunities to make the time count for something before it slips away.

While I listen to the jangle of coins in Dad’s pocket and pat Mom’s hand to keep her from pointing, I tell myself again that worth can be found even in the waiting room of Alzheimer’s. Why do I dwell on the negative, expecting the worst when all is well?

I promise myself, one more time, to turn on the lights and turn up the music in the waiting room. I decide to enjoy the satisfaction of small accomplishments—Mom’s hair brushed, her shoes tied. I marvel at the big ones—Mom being here at all, on time for a doctor’s appointment. I pray in thanks for the receptionist who always comes from behind the desk to give Mom a hug and then stays to talk a few minutes with Dad. I choose  to delight in Mom’s soft smile at a baby in a passing stroller, to relish the temporary quiet of her hand in mine.

Instead of watching for disaster, Lord, I’ll expect Your help. 

You are the light, Lord, and You never leave my side. Help me to stand confident on the rock of Your strength, walk forward in the brightness of Your love, watch faithfully for Your powerful help. When I’m tempted to doubt, to despair, to stop trying, turn my eyes on Your face, and I will be renewed.   

“My soul, wait silently for God alone, for my expectation is from Him. He only is my rock and my salvation…I shall not be moved.”   Ps. 62: 5-6  (NKJV)