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)

For What We Have Received…

Caregivers realize better than anyone else what Alzheimer’s steals from our loved ones.

Though all too aware we cannot succeed, we keep fierce watch, fighting to keep the disease at bay. Yet day by day we see it snatch away not only memory, but activity, relationship, expression—all the things that define our loved ones as the unique people they are.

But there’s another kind of watch caregivers keep, another kind of awareness we are specially equipped to maintain: the awareness of what remains. If we watch our loved ones with eyes focused on signs of their well-being, we’re blessed with glimpses of pleasure others might miss—like a simple conversation, enjoyment of a favorite meal, or the look in a loved one’s eyes that says “I see you” or “I like that.”

As caregivers, we sense the things that make those we care for happy. The things that give them peace. The things they’re grateful for.

So…we give thanks. On their behalf, and on our own.

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He’s allowed to touch Mom when no one else can. On the very worst days, when everything inside her rebels against our efforts to help, she will stop fighting and sit with him—for hours. And he, expecting nothing, can eventually gain all that we hope for: her calm, her cooperation, her comfort.  The wonder-worker is Charley-Dog, a silver miniature poodle, handsomely groomed about four times a year, the rest of the time as scruffy as Mom. He sleeps at her feet and when she stirs, the jangle of his collar alerts us. When Mom refuses to eat, the prospect of feeding Charley from her plate can induce her to accept a few bites herself. She always knows his name, never shouts at him, never turns away his affection. And she often tells him important things she won’t tell us, like where she hurts or what she wants or why she’s scared. Thank the Lord for Charley-Dog.

Potato chips are Mom’s favorite food. Even Charley doesn’t get a share of her chips. Too salty, too greasy, with insufficient nutritional value, they’re still a life-saver when she’s refused everything else all day. They’re also the ultimate distraction from imagined offenses I’ve committed. And they’re salty too, so Mom drinks more water when she eats them. If she could, Mom would thank You, Lord, for potato chips.

A smooth wooden rail is attached to the wall on Mom’s side of the bed. At least once a week, she calls it to my attention. At bedtime I walk at her side and she grips the rail, stopping a couple of times in the short, queen-size distance to run her finger along the grain of the oak. “See this, Child?” she asks me, looking intently at the rail. Then, turning her head to look just as intently at me, she says, “It’s new. Daddy made it for me. I love it.” At the last three words, her eyes smile, and sometimes her face does, too. I admire Dad’s handiwork anew each time, and thank the Lord Mom has noticed, she has explained, she has smiled one more time.

“Daddy.” Since my sister and I were born, that’s what Mom has called my father. I heard her use his given name only on the rare occasions when they argued in front of us. But now, even when she’s angry, if she calls Dad anything, she calls him “Daddy.” Maybe she doesn’t remember his name. But by the grace of God, she’s never forgotten him. She appears to understand that he belongs in the house, that he won’t hurt her, that she can trust him. When everything else in Mom’s world seems to be going awry, she reaches for Charley and calls for Daddy. And he’s always there. Always. To him she will always be beautiful, his best friend, his love. He will fight for her health, fight to make her happy, fight to keep her with him. Alzheimer’s has a formidable enemy in Daddy. Thank You, Lord, that he is her defender and she knows it.

Finally, Lord, I believe if she could Mom would thank You for me. On an almost daily basis, she shouts at me, ignores me, tells me to leave. But she also makes sure I see the birds on the birdfeeder, saves part of her cookie for me, and lets me bathe her every month or so. She never calls me by name anymore, but on some sweet nights after I’ve helped her to bed, she smiles up at me and says, “Child, I don’t know what I’d do without you.” And I answer, “Well, you never need to worry about that, Mama, ‘cause I’ll always be right here.” The look on her face tells me she believes me.

For that look and for Mom’s smiles, for all the things that still bring her comfort,  and for showing me and Dad how to recognize her pleasure, I thank You, Father.

…Lord, make us truly thankful.

 “Now, our God, we give you thanks, and praise your glorious name.”

(1 Chronicles 29:13    NIV)

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)

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.