How Do You Feel? Think About It.

If only we could guide our loved ones to act and feel in ways that would make caregiving easier for everyone. Of course that’s impossible. But we can help ourselves. The problems we experience with our personal lives and emotions are within our power to resolve. And when a caregiver helps him/herself, the person cared for also benefits.

We’ve talked in earlier blogs about isolation and loneliness. We’ve talked about frustration and exhaustion and the conflicts between duties at home and duties as a caregiver. For me, embarrassment was another challenge.

Embarrassment led me to do things that were definitely not in Mom’s best interest.

When I was a young mother, I was embarrassed any time one of my sons misbehaved in public. I felt the hot color rise to my face and I was certain everyone around thought my boys weren’t being raised properly. Years later, I felt the same embarrassment as a caregiver. When Mom refused to answer a neighbor’s hello, or went somewhere wearing spotted clothes, or shuffled her way around the counter to hug a cashier, I was humiliated. Surely people were thinking I was the caregiver—didn’t I care how Mom acted or dressed?

I did care. I blushed when Mom pointed to an array of artificial flowers and suggested to another customer he should smell them. I tried to hurry her along as we walked from lobby to examining room at the doctor’s office, hoping the others waiting in the long line of chairs wouldn’t notice her mismatched clothes and dirty hair. In restaurants I was so afraid she’d lose her grip on a cup or a glass, I practically held it myself.

How could I solve this problem with Mom, I asked myself. How could I get her to dress right and act right and be more careful?

I worked hard–and made a lot of mistakes.

  • I timed our errands carefully, trying to choose a good time on a good day. But those times were utterly unpredictable, not only as to when they would occur but also as to how long they would last.
  • I put some of Mom’s favorite clothes aside, the ones she liked that still looked presentable. I saved them for her to wear on errand days. But telling her what to wear on any day was seldom successful. So I withheld her favorites from her when she wanted to wear them and tried to make her wear them when I wanted her to.
  • Mom usually enjoyed going out to eat, but her hands were unsteady. Fearing she’d spill something, I made the meal an ordeal for both of us, as I cautioned her with every bite and reached across her to steady her tumbler of water or tea.

What was I thinking??

The problem is that I wasn’t thinking. I was only feeling.

dog afraid

One day as a waitress was serving us breakfast, I held Mom’s hands back so she wouldn’t reach for the plate herself. The waitress looked at me and said, “You don’t have to hold her. She’s all right.” Then she focused on Mom and smiled. “We can work together here, can’t we?” she said. Mom’s face lit up like sunrise.

That incident prompted me to look harder at myself. I had told myself I was protecting Mom’s dignity, protecting her from embarrassment.  But looking back on the happenings of that morning, I saw clearly that the waitress was right. And I was wrong. I had felt I was taking care of Mom. But I wasn’t doing a very good job of it.

As I accepted that I was wrong, I knew I had to change something. I thought about it. A lot. What I discovered as I dug into my feelings—journaling about them and sharing them with those close to me—is that the motivation for my actions was not concern for Mom’s dignity, but for mine.

I was protecting myself from embarrassment. Adding stress to our days by trying to predict Mom’s moods. Denying her the pleasure of wearing her favorite clothes by hiding them until I decided the time was right. Stealing her fun in eating out by treating her like a rowdy child.

Once I identified what I was really feeling, I realized I was the only one who could fix my mistakes. Take Mom out of the equation. So I thought some more.

  • I began to see that how Mom acted in public was important only insofar as it affected her safety.
  • Experience led me to understand that what she looked like was much less important than what she ate, how well she slept, how regularly she took her medications.
  • And instead of worrying about her spilling a glass of tea, I solved the problem by simply asking that her drinks be served in a small paper cup, lighter, easier for her, and safer. 

stock-dog playing

The stress level went down, for me at least. And because Mom seemed more relaxed as we prepared to go out, errand days became a little easier. But more important to me than either of  those benefits was the realization that my feelings of satisfaction  associated with helping Mom live fully and happily were far more pleasant than the embarrassment and frustration provoked by my false pride and embarrassment.

Of course it’s impossible to tell ourselves what to feel. But we can and must control the actions we take as a result of our feelings. Whether the emotion is guilt, fear, embarrassment, anger or any other of the feelings most caregivers experience, we can think about it, name it, and then either help ourselves or ask for the help we need.

When we take care of ourselves, everyone is better off.

I instruct you in the way of wisdom and lead you along straight paths. (Proverbs 4:11 NIV).

Father, please open our eyes to see clearly our loved one’s needs, and also our own. Guide us to the truth, and help us use it for the good of those we care for, to bring them, and ourselves, more abundant life.

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)

Where Are We?

“You, O Lord, keep my lamp burning; my God turns my darkness into light.”   (Ps.18:28)

      Though I can’t name the destination yet, I know my life has taken a turn.  I’ve started a new journey.  I sure hope the Lord has the map.  

     The motel room is tiny.  Two beds, one for my parents, one for me, each covered with a plain but practical brown bedspread.  A beige formica-topped table.  A sink on the back wall, shower and toilet on one side, dresser and mirror on the other.  Tiny, but fine for a quick overnight stay on our trip to visit my son.  

     The only crowded spot in the room is the corner by the door where my father stacked all the things my mother insisted on bringing in from the car.  Not just the luggage, but the maps and the flashlight, all the tools and the battery jumper cables.  Dad didn’t object until Mom started dragging out the floormats.  I laughed as though it’s just a new eccentricity she’s developed, but anxiety buzzed like a mosquito in my brain as she went back and forth to the car, closing the heavy metal door to the room each time she went out, knocking on it when she wanted to bring in another load.

     I think back to my surprise a couple of weeks ago when I first mentioned this trip to my father.  I expected he’d jump at the chance for a trip to Colorado in the fall. Instead he hesitated.  He wasn’t sure about Mom, he said.  “She changes her mind a lot. It’s hard to plan things now.” 

     But here we are, halfway to our destination, and the trip has been just fine. 

     Until now. 

     Once she rests from unloading the car, Mom stands and then turns in a full circle around the little room.  She turns once more and finally asks where the TV is. 

     “Right here on the dresser, Baby,” my father tells her.  “See?  Right here.”  He takes her hand and places it on the television.

     “Oh, of course!  What am I thinking?” She stares at the TV until Dad turns it on.

      I should ask.  I should take my father outside and ask him what’s up.  But I don’t.  I tell myself I don’t want to embarrass him, or Mom.  Surely everything’s ok. 

     During the night I awaken to the sound of her voice, high-pitched and anxious.  “Where are we?” she asks my father. 

     He explains.

     Almost immediately she asks again, “Where are we? I need to go home.”

     The square brown clock on the bedside table reads 2:43 am.  Too early to go home, I tell myself.  Or too late.

     Where are we, Father?  What’s going on?  The smooth road of my life has changed, with a sudden curve in a different direction.  Where does this road lead, Lord?  I feel like I’m driving in the dark with no headlights.  But in the night I remember Your goodness.  Your power.  And I tell myself You won’t leave me in this darkness.  You know exactly where we are and You will be with us as we move forward.  Our strong refuge, today, tonight, right now.  Thank You, Lord, for lighting the way.