Begin with Trust…in Yourself

Everyone with Alzheimer’s has it a different way. The range of symptoms is wide. Not everyone develops all of them. And there’s no timetable for how fast or slowly the disease develops.

In addition, there’s no way to predict at what point the disease will reveal itself to outsiders. Depending on how much time we spend with them, how open they are about their daily activities, and whether they or a spouse or friends try to hide the symptoms, we may discover in the beginning stages of Alzheimer’s that our loved ones need care, or we may not find out until far enough along that we wonder why we didn’t notice sooner.

Given all the variables, how do we begin? Where do we start?

I discovered Mom had Alzheimer’s on a car trip I made with her and my father. Dad had been hiding her symptoms for a long time, but as we were together 24 hours a day, I witnessed the issues firsthand. Mom was absolutely incapable of deciding what to wear.  Ordering from a restaurant menu made her so nervous, she wouldn’t eat. She had major problems with incontinence. Some things I tried to pass off as the eccentricities of getting older. But when Dad and I told her she couldn’t go out for a walk alone–and barefoot–the severity of the symptoms couldn’t be ignored any longer. Mom screamed and kicked and hit us. It took both of us to get her to a sofa where she thrashed and fumed until exhaustion overtook her and she fell asleep.

Mom was still at the point where she had good days and bad days. The next day of our trip was miraculously good. Still, the introduction had been made. I looked Alzheimer’s straight in the eye—and panicked.

At home, as I talked to my husband about the shocking events, he said, “You’re talking like this is a crisis.”

I’m sure I shrieked my reply. “Of course I am! If this isn’t a crisis, what is?” A few minutes passed before I could take in his words. When I did, I realized he was right.

panic-or-calm-signpostWhat he was trying to tell me is that, no matter how hard I tried,  Alzheimer’s isn’t a crisis that, even with great expense of effort, can be dealt with and resolved. Instead, Alzheimer’s is a condition of life. It affects every facet of every day, for the patient and also for those who care for him or her.  It can’t be fixed and left behind like a bad memory. It moves in to stay.

Once I had taken time to let that reality sink in, reason and common sense made the next steps easier to find. I escaped the panic and sense of helplessness I felt in those first days, and began to, as the saying goes, just do the next right thing.

Here’s what I learned:

  •  I could not possibly do everything at once.
  •  But I could see the priorities; I could tackle them first. For example: Mom often wore the same clothes day after day, but what she wore was far less important than her health. So one of my first actions was to make an appointment for a complete check-up. Mom saw the doctor in clothes that were less than fresh, but I found out it was ok. The clothes-police didn’t even give us a warning ticket.
  • I couldn’t do it all.
  • I couldn’t do it alone, and I didn’t have to. I had a Helper with me every minute. And earthly assistance was abundant if I would search it out and ask for it.

 In other words, what I learned is that I could trust myself.

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Did I do everything the best way? Heavens no! In particular, I never learned to insist on having help. But everything that had to be done got done. And Mom lived as fully and happily as Dad and I could help her live…which made Dad and me feel happier than I ever imagined we could back in those first desperate days.

So, wherever you are in the caregiving journey, I urge you to trust yourself. You can do this. And ask questions. Ask for help. You don’t have to do it alone. You have more resources than you can imagine. One of them is right here in this blog. I’m praying for you.

God is our refuge and strength, a very present help in trouble. Therefore we will not fear,
even though the earth be removed, and though the mountains be carried into the midst of the sea…  (Ps. 46:1-2  NKJ).

Father, we know You are always with us. Help us trust in Your guidance and love and care, for ourselves and for our loved ones.. Trusting in You takes away our fear. Thank You, Father.

Miracles Light the Darkness

Seeing miracles makes us long to see more. Watching for them gives us hope. A sudden “yes,” a change of mood, an easy meal—no matter when they occur, miracles make caregivers stronger.

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“It’s OK.” It seems we say it to our loved ones maybe a hundred times a day. Do they believe us?

“It’s OK, I’ll help you.”

“It’s OK, I’ll clean it up.”

“It’s OK, let’s try again.”

“It’s OK.  It’s OK.” Do they ever believe us?

Sometimes Mom did. How do I know? She told me so. If we watch those we care for closely, they’ll tell us lots of things. Not the way they used to, but in the ways they still can.

Evening was a difficult time for Mom. Each night brought a question that wouldn’t let her rest, and our answers didn’t always satisfy her.

“Where is our car? Is it safe?”

“It’s OK, Mom. It’s in the garage. Very safe.”

“It’s outside?  The car.  Where is the car?”

On and on.

I could give different answers or try to change the subject, but usually Mom remained unconvinced. Eventually I found more success by showing instead of telling. “I’ll go check on it right away.” I’d go outside, open the garage door, close it, come back inside, and say, “The car’s fine. Thank you for reminding me, Mom.” That might be the end of it. Or we might begin again almost immediately.

Each evening, I worked toward only one goal: to convince Mom that everything was OK. Pat her hand, hold her long, nicotine-stained fingers in my short, square ones, and assure her, “It’s OK, Mom. We have it all taken care of.”

Eventually, bed time would come. Sometimes welcome, often not.

“I’m not tired.”

“That’s OK, Mom. Let’s just get ready. Then when you are tired, you can just go crawl under the covers.”

“I’m ready right now. And I’m not tired.”

So, time for the ultimate strategy. The irresistible force which could almost always move my well-nigh immovable mother. I called it “Keeping a Secret from Dad.” I’d stand up, turn to my father, and—whether he was awake or not—say with dramatic volume, “We’ll be back, Dad. You stay right here. We don’t need you to come with us.”

Then, turning back to Mom, I’d wink several times, extend my arm to her, and say, “Mom, I need to show you something back here in the other room.”

Two women headed for the bathroom to share secrets. It was indeed OK. Once we closed the door, my whispers and giggling kept Mom’s attention on me and off our lengthy clean-up procedure. By the time we left the bathroom, Mom was truly tired.

As we walked arm-in-arm to her side of the bed, we passed the large black and white portrait of my sister and me, made four decades ago at a time when my parents could scarcely afford it. We passed Dad’s closet, perfectly arranged, the shoe-shine basket front and center on the top shelf. We passed the chair that held the turquoise and white package of disposable underwear, ladies size medium.

As soon as we rounded the end of the bed, Mom would reach for the wooden rail Dad attached to the wall to help her steady herself. She always commented on it. “Isn’t this nice? Your father made this for me. It’s new. Don’t you like it?”

Finally we were in place.

“OK, Mom, just sit right here.”

After rearranging her feet, looking at the bed, and saying “OK” a couple of times, she perched on the tiniest edge of the mattress.

“Good, Mom, but let’s sit way back. We don’t want you falling out of bed!” I would laugh.

She’d look up and say, “Oh, child, what am I thinking?  I’m sorry.” And then she would stand with difficulty, re-position herself, and sit back down in precisely the same spot.

“That’s OK, Mom. Let’s try it again.” If it was just too hard for her that night, I’d virtually pick her up and put her in a safe position, slide her stiff legs up, help her unbend, pat and smooth and smile and say, “There! How’s that? OK?”

Then my reward. The reward for this long evening. The reward that made it all OK—these months, these years of saying goodbye. The reward that still consoles, comforts, wraps me in memories of mother and child and child and mother. The reward. I can hear her yet.

“Oh, that’s fine, child,” my mother tells me with a smile like soft sunlight. “That’s really fine. Thank you so much, child. I just don’t know what I’d do without you.”

“Well, you don’t ever have to worry about that, Mom. I’ll be here.”

I’d bend down, so far down, and kiss her cheek that still smelled of cigarettes and soap as she closed her eyes, the sunshine smile setting on her face.

“Child.” Did she remember my name? It didn’t matter. I think she knew I was hers. That made it OK. That made everything all right.

The Lord watches over you—the Lord is your shade at your right hand;  the sun will not harm you by day, nor the moon by night (Ps. 121:5-6   NIV).

Father, we know that every good thing comes from You. Thank You for the miracles You show us through our loved ones. Guide our minds and hands and words, Lord, so that we may show them Your love and care.

The Sudden Yes

I kneel on the damp rug in the pink tiled bathroom and let my arms drop to my sides.  Turning my palms up, I bend forward until the backs of my fingers touch the fuzzy loops of the rug.

“Thank you, Lord,” I whisper.  Smiling with relief.  Tearful with gratitude.  Still amazed by the miracle He worked here just a while ago.

Mom consented to a bath.

“Thank you, Lord.  Thank you.”

This bath is Mom’s first in three weeks or more.  I have suggested or asked or pleaded with her almost every day, sighed when she said no, then prayed that tomorrow will be the day she says yes. Her refusal to bathe is stacked among myriad other refusals, like so many boulders stuck in a muddy road.  No to breakfast, no to medications, no to combing her hair, changing clothes, putting on shoes.  So many no’s from Mom, so many prayers from me.

And so many answers from the Lord! Answers delivered in a stunning way, like sunlight breaking through a storm cloud.  “Yes!”  My mother’s sudden yes.  Yes, she will eat.  Yes, she will walk outside for a while.

Today, yes, she would take a bath. A miracle.

Now the tub is rinsed, the shampoo bottle capped, the towels back on the rack.  Mom is settled in her chair facing my father’s, with Charlie dog between them.   I linger in the bathroom, savoring the sweetness of the past hour, listening to my father’s booming praise for the woman he still loves so patiently, so dearly.

“Look at you, Honey!  You look beautiful!”

“My hair is all wet,” she says. I can’t see her, but I imagine Mom patting her head, a smile flitting around her lips, settling in her eyes. Her words are single syllable notes I can scarcely make out in the loud chorus of celebration from my father.

“It’s shiny!” he fairly roars. “Clean and combed and shiny!”

“Thank you, Lord.” I must say it once more before I rise from the rug.  For my father’s joy, my mother’s calm, my own relief.  They will be fuel for our hope for many days to come. 

The Lord met us here today with His sweet provision.  With wisdom, the promised reward of patience.  The wisdom of warm water, slow movements, a daughter’s perseverance, a husband’s devotion.  This bath, this one miracle in the string of daily miracles we are given in answer to our prayers, will light our steps forward.  Small steps, and slow, but taken with the Lord of all hope leading the way.

Let us not become weary in doing good, for at the proper time we will reap a harvest if we do not give up  (Galatians 6:9 NIV).

We pray to You, Father, in weariness, but with faith. We pray in desperation, but with hope. We pray in confusion, but believing that You hear, trusting You will answer our prayers with power and mercy. Great is Your faithfulness. Thank You, Lord.

Good Night

As morning problems have to do with getting started, the evening challenge is to wind up the day and get some sleep. Fatigue adds stress in any situation. In an Alzheimer’s household, fatigue can make evenings seem unbearably long.

Dad and I are exhausted, but we can’t rest til Mom is safely in bed.

Mom is tired, but she doesn’t understand how to “fix” that feeling, and is in no mood to cooperate when we try to help her.

Seems we’re all trapped in the dark.

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I concentrate on five strategies to get us all unstuck and tucked in:

1)  Don’t argue with Mom. Agree with her version of reality.

2)  Use actions, not words, to calm her anxieties.

3)  If she refuses to go to bed, be ready to back off and try again.

4)  Old behaviors and routines can help Mom cooperate.

5)  Talk works well as a distraction when I’m maneuvering Mom in a direction she doesn’t want to go.

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 These strategies take time, but they work.

Arguing with Mom—or any Alzheimer’s patient—is worse than pointless. Trying to convince her of what is clear and reasonable to me only increases her frustration and confusion. So when she says she’s afraid a fire might destroy the house during the night, I do not try to convince her that the house is safe. Instead, I agree that a fire in the night would be a problem. Then…

…I take action. Instead of relying on words to convince her the house is safe, I walk through it, every room, “checking it.” Mom sees that I take her fear seriously. Watching me act on her reality helps her accept my words.

If Mom refuses my first suggestion of bedtime, I have two choices. I can use physical strength to make her cooperate, or I can back off and try again later. As I pointed out in the previous post, I always do the latter. For one thing, trying to force Mom to do something would likely get one or both of us hurt. And Mom still wouldn’t be in bed. Waiting a few minutes gives Mom time to forget my earlier request and her earlier refusal. I ask her again, as if for the first time. Sometimes she says yes in relatively short order. But if not, I don’t ask any more. I move on to the next strategy.

Old behaviors and routines can help your loved one cooperate. If you remember a habit your loved one used to engage in, use it to accomplish what needs to be done. For example: my mother used to love to share trivial information with me or my sister that she pointedly refused to tell my father. She enjoyed feeling she knew things he didn’t know. So some evenings when she doesn’t want to go to bed, I coax her into the bathroom on the pretense of telling her something important. I whisper that “Daddy doesn’t need to know this; this is just for you and me.” I’m not sure she understands, but clearly something in her mind reacts to my drama of secrecy, and she accompanies me to the bathroom. Once there, I just talk girl talk – what I should wear to a non-existent party, who’s dating whom in Hollywood – it doesn’t matter as long I keep whispering and giggling. All through the difficult clean-up jobs, the persuasion to change her clothes from the skin out, the washing of hands and face – girl talk.

Talk has another useful purpose. In the evening or at any time of day when you must persuade your loved one to move in a certain direction, non-stop talk can be the distraction you need. In the evening, for example, whether during the trip to the bathroom or from the bathroom to the bed, I could take Mom’s arm and maneuver her with the bulk of my body. If she was inclined to resist, I’d start talking, laughing, asking questions. The non-stop chatter drew her attention away from where we going, and by the time we got there, she had usually forgotten she didn’t want to go.

Finally, the one strategy that applies across the board in caregiving bears repeating here. We must believe. Believe that the day can end sweetly, sleep will come, rest will refresh us all, and – whether through the night or in the light of day – we are never alone. Knowing and believing give us strength, energy, and compassion to pass along to our loved ones. They keep us moving forward.

When we’re tired, Lord, it’s not easy to remember You’re with us. At those times, remind us, please, of evenings in the past when You turned stress to calm and fatigue to peaceful sleep. Those memories give us strength in the present and confidence for the future.

“Come to me, all you who are weary and burdened, and I will give you rest.”

(Matthew 11:28.NIV)

Good Morning? Yes!

Morning problems, in my experience, have to do with getting started.

Clean clothes

Food and drink

Medications

Those are Mom’s immediate needs when she gets out of bed. The problems arise when she refuses clean clothes, food and drink, and/or medications. If she refuses one, she will often go on to refuse all three.

Two actions are called for on those days:

1) I have to expect that — sooner or later — Mom will cooperate; and

2) I have to step back if she refuses, wait, and try again later as if it were the first time.

Taking those actions always produces positive results for me.

And yes, both are ACTIONS.

Expecting success has to be more than a thought. It must be a conviction: Mom WILL cooperate and she will probably do it right away. That expectation leads me to act in a certain way. Caregivers soon realize that their own stress and anxiety spills over onto their loved ones, and can complicate a good situation or make a difficult one even harder to resolve. Similarly, our expectation of success translated into calm, assured words and movements can influence our loved ones in a positive way. So foreseeing a good outcome lets me be relaxed. I can smile as I take Mom’s arm and lead her to the bathroom.  If she refuses to cooperate right away, my expectation of eventual success prompts me to take additional actions: I watch for signs she’s ready for help; I stay prepared with clothes at hand, food and drink kept warm or cold, medications close by and ready. And expecting success gives me more patience, more energy to keep trying.

Backing away when Mom refuses to let me help is hard in a lot of ways. When she doesn’t want to get clean and dressed, the threat to her health from lack of hygiene is bad enough. But messes of all kinds can result from Mom not being clean. When she goes without food and drink after having nothing during the night, her physical/mental/emotional condition can decline quickly.  And the need to take medication on at least a fairly regular schedule is critically important. So backing away when Mom says “No!” is very hard to do. But what is the choice? I never use my physical strength to get Mom to do something unless she’s in immediate danger. I can clean the messes later. And if I become concerned that lack of food, drink, or medication has gone on too long, I can call the doctor for help and advice. So I back away.

And wait. But again — this is an active waiting. I watch for a change in Mom’s expression, a look in my direction, restless movement, maybe shuffling her feet. I listen for a word, a sound. Those can be signals that Mom’s “in a different place” and might feel more agreeable. The more important point is that I let some time pass, usually just a few minutes.

Then, even if I see no outward indication of any change,  I try again. Maybe I use different words. Maybe I approach the task differently. Or maybe I do things exactly the same way as last time. And maybe Mom will say yes this time, maybe not. But my actions and attitude are based on my absolute conviction that she will cooperate. Probably soon.

Finally, when I try again, I make sure to do it as though this is the first time today we’ve started this activity. I say nothing about Mom having refused earlier. I make no mention of time or being late. We’re simply doing what we do every day: getting dressed and eating and taking medications.

These actions work for me on every difficult morning. Of course they also apply to other situations at other times of day, but mornings are special, especially for caregivers. Our loved ones likely won’t remember in the afternoon or evening whether their morning went smoothly or not. But beginning the day well is a real boost for us caregivers.

Father, You have promised that when I call, You will hear and answer. I experience the truth of that promise daily.Thank You for allowing me to trust You completely.

In the morning, Lord, you hear my voice; in the morning I lay my requests before you and wait expectantly  (Psalm 5:3  NIV).

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.

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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)

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)

The Certainty of Uncertainty

Living with Alzheimer’s means life is unpredictable. Things that used to be second nature to your loved one—routines and schedules, even basics like getting dressed and eating meals and going to the bathroom—are forgotten. They’re lost slowly or quickly, for now and then or forever, but lost to the point that life becomes as unpredictable for you, the caregiver, as it is for your loved one.

What is certain is that we aren’t alone. So we can manage, even the unpredictable.

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When it comes to dealing with Mom, Dad and I don’t know what to expect any more. Will she wake up happy or angry? Will she be able to go to the bathroom and dress on her own or will she need help? If she needs help will she accept it or refuse it?

The answers to those questions carry special weight this morning. Mom has an appointment with the doctor today. Dad and I will get information today. We’ll find out how to help Mom today.

If she agrees to go.

I wasn’t here the day of Mom’s last appointment, but things were predictable then. It’s likely she had the appointment scheduled early so she and Dad could go to breakfast afterwards. Of course Mom would have bathed, probably the night before. She probably went through the normal exam sequence without complaint, allowing the nurse to get her blood pressure, temperature, pulse, and weight. I can imagine her sitting calmly while the doctor listened to her chest and told her, as he surely did every visit, to stop smoking. I can picture him asking about her medications for cholesterol and high blood pressure—they were having the desired results, but were they causing her any difficulty? “No, no,” she probably said. “They’re fine.” Some smiling and shaking hands would have ended the visit, and Mom and Dad would have stopped by the desk to make another appointment for the next year.

But today isn’t a year later; it’s just over six months. Yet, so much has changed. Mom refused to bathe last night. She woke later than usual so there’s no time for a bath this morning. She comes into the kitchen wearing what she wore yesterday: black slacks, decorated with a bit of catsup from dinner, and a wrinkled red t-shirt.

“Honey, I know you don’t have time for a bath,” Dad tells her, “but at least you want to put on clean clothes, right?”

Mom’s face darkens like a cloud heavy with rain. “No, I want to wear these clothes.” She walks to her chair at the table and sits. “That’s why I put them on.”

I stifle Dad’s complaint with a don’t-make-waves look and a tap to the face of my watch.

But we’re already tossed by rough water. I give Mom her hair brush; she drops it on the floor. I fetch her tennis shoes from the bedroom, but no, she wants the green ones. I ask if she’s hungry and get no response at all.

Since she’s making no move to put on the shoes, I bend down to do it for her. “Well, I am!” I say. “I’m hungrier than a dog that hasn’t eaten in a thousand years.” The expression is one my sister and I made up back when we were growing up in this house. It earns me a smile from Mom. I feel like a first-grader with a gold star on my homework.

Mom’s still smiling as we drive to the doctor’s office. Dad is silent, his knuckles white against the steering wheel. Me? I’m praying. Surely the doctor will see how drastically Mom has changed in six months.

He must see, Lord. Please help him see. Help him help us.

In these days when nothing is predictable, thank You, Father, for the certainty of Your care. I know we can rely on You to guide us through the present darkness. You can move reluctant feet toward healing. You can draw sad hearts to hope. You can bring new smiles to faces made hard by confusion and fear. Thank You, Lord, for loving us forward.

 “I wait for the Lord, my soul waits, and in his word I put my hope. My soul waits for the Lord….for with the Lord is unfailing love.”   (Ps. 130:5-6, 7)