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.

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

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)

Advertisements

A New Name!

 Yes, I changed the name of the blog. Instead of Living with Miracles, it’s now

Alzheimer’s: Hope and Help for Caregivers

While the old title is entirely accurate — Alzheimer’s caregivers can expect to see miracles every day — the new name should make it easier for caregivers to find the hope and help this blog will continue to offer. 

Thanks to all of you who read and share the information in Alzheimer’s: Hope and Help. The person writing the words is still me, Kathleen Brown. And I’d love to know you better! Please feel free to introduce yourselves — and let me know if you have specific questons about caregiving — by clicking in the “Leave a Reply” box below. I look forward to hearing from you.

P.S.  To those of you who don’t receive news of each post via email, if you want that convenience, just look for the “Follow” button in the right column of this page. Enter your email address right above the button, then click “Follow.” That’s all there is to it. You’ll get a short email when something new is posted.

Finding the Courage

‘Not by might nor by power, but by my Spirit,’ says the LORD Almighty.  (Zech 4:6   NIV)

The picture behind the shattered glass shows a slim woman, my mother, wearing capri pants and a cardigan sweater. One arm, bent at the elbow, is slightly raised so that her wrist is about level with her shoulder. In that hand she holds a cigarette. With her other hand, she grasps the palm of a little girl maybe four or five years old, wearing jeans and a striped t-shirt. Because the little girl’s head is turned, you can see her wavy hair pulled back into a ponytail. My sister. She’s looking to her left, at another little girl, shorter, younger, three or maybe four years old, with short, kinky curls framing her chubby face. Me.

Earlier this morning, a travel commentator on TV mentioned the Grand Canyon. Dad wanted to remind Mom of our long-ago vacation there so he pulled the framed black-and-white photo out of a drawer. Mom studied the picture, said she didn’t know those people, and threw it into the kitchen where it hit the refrigerator before crashing to the floor. The photo itself survived, but one side of the wood frame snapped off and, of course, the glass broke.

Now, without a word, Dad picks up the frame. He taps it against the table; broken glass rains down onto the tablecloth. While he removes the photo, I dispose of the glass and when he goes out the back door, I follow.

In the garage, Dad retrieves the wood glue from a shelf. Then he opens a drawer, chooses a clamp from among the neatly arranged contents, and slams the drawer shut.

It takes all my courage, and then some, to stand between him and the door, blocking his exit. I’ve prayed for this opportunity, and I recognize the Lord’s power in the words I finally say.

“What if Mom didn’t have to be so angry all the time?”

Dad’s cloudy blue eyes meet mine for a second, two, shocked, I imagine, that I’m confronting him. I stand my ground, and he looks away, down to the floor. It’s littered with sand and grass clippings, a stray screw, a paintbrush in the corner by the worktable.

In his silence, I push my case. “Look at this floor, Daddy. I’ve never seen your garage this dirty. Never in my whole life.” He still won’t look at me. “And what’s with your tools? The rake’s just leaning against the wall and look—you never leave the hoe off its hook. Especially not with the sharp edge facing out.”

 Finally he speaks. “I know.” In his voice I hear the defeat I see in his stooped shoulders. “This garage is a mess. I’ll get out here and give it a good cleaning one of these days.” He moves to go around me but I’m not finished. I wish I were, but I know I’m not.

“When, Daddy? When will you feel comfortable spending three or four hours out here? You can’t leave Mom alone that long. She might decide she’s tired of your seed catalogues and put them in the toilet. She and Charley-Dog might head out the front door for a walk. Or she’ll make her point about medicine by throwing all her pills down the drain.”

 At last Dad raises his head. “She’s mad because she’s depressed. It’s not Alzheimer’s. She’s depressed.” He challenges me. “What’s a doctor going to do about a bad mood?”

“Maybe nothing,” I have to admit. “But maybe something! We won’t know ‘til we try.”

I’m as perplexed as Dad, so the terms of my persuasion must consist mostly of hope. Hope that Mom will cooperate with the doctor. Hope that medication can improve her life, their life together. “Yes, the doctor might say it’s Alzheimer’s,” I continue, “but even so, what if things could be better? What if there’s a way to help Mom and we don’t try?”

With his chin back down on his chest, Dad sighs. I feel myself weakening. I want to rescue him from his fear, tell him he’s right, Mom’s just tired, she’ll feel better in a few days, a few weeks maybe. But it’s not true. So I press my lips together and wait.

At last Dad looks up. “I guess we could give it a try.”

Hope. Is that hope I see in his eyes?

“Yes, Daddy, we can try! We can take her to the doctor, talk to him, let him check things out. Maybe there’s a medication that will help her lighten up. Maybe he can refer us to a specialist. Maybe with some medical help, Mom can be happier. Maybe both of you can have some peace. Maybe you can have your lives back.”

As we leave the garage, all the maybe’s echo in my head. I wonder—do I believe those things myself? 

I pray. I pray to believe. I pray for faith in God’s love. For strength to rest in His care and His power and His mercy. I pray for any kind of hope I can hold on to, and pass along to Dad.

Thank You, Lord, for convincing me to face reality. Thank You for showing me that truth is the right—the only—path to help.

Truth says Dad may indeed have to face his life without Mom in the house with him. Truth means I must finally grow up, be an adult with my parents, even if that means I may say or do things they don’t like.

But Truth also lives  in Your promise You will never leave us. In the hectic hours of day and the lonely hours of night, You will bring us Your mercy and comfort. That is Truth.

When You assure me of your love for Mom, for Dad, for me, I believe.

 

 

Family Ties

“I will be a Father to you, and you will be my sons and daughters, says the Lord Almighty.”   (2 Cor 6:17  NIV)

Despite my resolve, I sit here day after day, swallowing the words I should say. I try to swallow my anger as well, but it just won’t go down.

I’m angry with Mom, though I doubt she can control her wild behavior. I’m angry with Dad, though I know he’s afraid.  

Mostly I’m angry with myself.

Anger. It lives in this house. Mom’s anger dozes on the green couch, oblivious to the smells of urine and cigarette smoke that cling to the cushions.  Dad’s stares out the kitchen window, cursing the weeds in the lawn. Mine sits at the kitchen table, drumming its fingers on the vinyl cloth.

As I look at Mom now, I remember the scene just a few days ago: her eyes ablaze with rage over a comment Dad made about her hair, her hand slamming down on the table, hot coffee erupting from a cup and spilling onto the floor. That irrational behavior isn’t going to change on its own. In fact, it doesn’t take much for me to imagine that scene ending with someone burned by whatever hot liquid might be on the table next time.  I can even see the day when Mom might slam her hand against Dad instead of the table. 

Deal with that thought, I tell myself. Deal with that.

If only I could see these people—my parents—as strangers. Just an older couple I happened to meet. If they were anyone other than my parents, maybe I would take charge, with common sense, strength.

“Get your wife to a doctor, Sir,” I could say. “And if she won’t go, find a doctor to come to your home. She’s irrational. At times she’s out of control. She’ll hurt herself. Or you, Sir. It’s just a matter of time.”

I’d stop him when he claims she’s just tired, maybe depressed. “This goes ‘way beyond tired, Sir. And I don’t know enough about depression to say if it can cause behavior like hers, but I know she needs a doctor. Just waiting for something to change won’t help.”

At this point the older man might have his head in his hands. Or he might be staring at me, pain in his eyes, or fury. But I’d continue, no matter how sad or angry he looked.

“I can see what you won’t acknowledge,” I’d tell him. “I see how bad it can get. Your wife’s actions will hurt someone if you don’t intervene.”

Maybe he’d say, “I’m here! Nothing’s going to happen I can’t handle.”

But I’d keep the pressure on. “You can’t be with her every second. And even if you could, she fights you. I’ve seen it. What will happen when she hurts you? Worse, what will happen when your hands bruise her or your fingernails scratch her or when she fights so hard to get away from you she falls and breaks a bone? How will you feel then, Sir?”

By this time he might have tears in his eyes. Or he might turn and go out the door, slamming it behind him. Regardless, I would have said what needs to be said. He would have heard what he needs to hear.

But these people aren’t strangers. It’s my father I’d be talking to, my mother I’d be talking about. I am their child. The one who feared making waves, who always tried to please, who’s still programmed to accept her father’s words as fact, as law.

I am their child. But I have to be the adult here now. If anything can be done to set their lives on more stable ground, I have to do it.

God help me.

Lord, you know me. You know my parents. And you know Alzheimer’s. As I look at those three things, I see weakness, denial, and destruction. But when you look at them, you see hope. A plan. Miracles. Strengthen me, please, to see as You see and act according to Your inspiration. Remind me to expect miracles.   

Clues

“Call to me and I will answer you and tell you great and unsearchable things you do not know.”  (Jer 33-3   NIV) 

Time passes and the signs accumulate, pointing more and more directly toward Alzheimer’s. Although some are ambiguous—anger, for example—others are more obvious, like the questions and confusion.

This morning brings a new one. Mom can’t put on her shoes

First, she couldn’t find them.

“Shoes, Baby!” Dad’s voice was loud enough to rattle the teacups as he rose from the table to get the shopping list off the refrigerator door.

Mom lifted her napkin and peeked at the table beneath it, then said, “They’re not here.” So I brought them from the closet and set them on the floor by her feet. With a smile on her lips but not in her eyes, “Thank you, child,” she said.  

Now she sits, still barefoot, bent at the waist, knees apart, with her hands dangling over the shoes. “I don’t know,” she says. “Are these shoes? Are these for me?” She sits back and, one at a time, lifts each foot about half an inch off the floor.

Confusion takes on a whole new meaning. I turn toward Dad, lift my eyebrows, frown. “How long has this been going on?”

He’s walking out of the room and gives no response beyond a slight pause and a shrug of his shoulders beneath his blue plaid shirt.

Shoes, Mama. You taught me how to put them on.  I bend down and, with strength that could come only from the Lord, I manage to laugh while I put the shoes on her feet. But I have to turn away and wipe my eyes before I stand up again.

The familiar question runs through my mind again. How long has Dad been hiding this? We live in the same town and visit regularly. My husband and I come here; Mom and Dad come to our house.  Yes, even before our fatefull trip to Colorado, a few things had caught my attention, but I just chalked them up to Mom getting older.

What I see in this moment is more than Mom aging. Much more than the fatigue and depression Dad says she feels. How long has Dad been hiding Mom’s condition? Or hiding from it?

And why didn’t I see the big picture? Most of the changes I noticed were small, like Dad always answering the phone, Dad finishing Mom’s sentences, Dad’s handwriting on the shopping list instead of Mom’s.

But some changes were bigger. Mom used to cook every night. But for months now, the freezer has been stocked with frozen dinners. Dad brags he and Mom have a new variety every night.

Even the abbreviated vacation to Yellowstone, two years ago. Dad said they wanted to take their time, enjoy the Park and every sight along the way, so my husband and I were set to keep an eye on their house for three weeks or so. But the trip lasted just five days: two spent driving there, three coming back to Texas. Dad wouldn’t talk about it. All he said was, “Your mother changed her mind.”

I should have realized something was wrong, should have cornered Dad and made him talk to me. If I had, would Mom be able to put on her shoes today?

I’m careening toward shame when the chorus of guilt is suddenly silenced. Instead of “should have, should have,” I hear the Lord’s words: “Before [you] call I will answer; while [you] are still speaking I will hear (Is. 65:24).” His hope. His comfort. His promise to be here. With us.

Squaring my shoulders, I step back into now. “Ready to go get some groceries, Mama?”

“Ready,” she says. Holding on to the table for balance, she lifts one foot high and points it at me. “See? I have these on!”

Her smile is triumphant. In Him, mine is, too.

Thank You, Father, for reminding me it’s not good to look backwards. Standing firmly in the present, facing forward—that’s where I need to be. That’s where I can help. And that’s where You always meet me, offering Your wisdom, Your power, Your comfort, Your strength. Here and now. Always. Thank You, Lord.