Friends in Need

Caregivers get lonely. The job itself isolates us: our duties leave little time for lunch with a friend or participation in group activities or even a satisfying phone conversation.

Yet companionship, conversation, and the opportunity to share feelings and concerns are some of the most effective weapons against a malady that over 80% of caregivers experience: depression. We owe it to ourselves and our families and the loved ones we are caring for to take advantage of any opportunity that presents itself to think and talk about anything other than Alzheimer’s. We may be surprised at where we find some of those opportunities.

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My parents never socialized much. They were best friends, and apparently saw little need for other relationships. But then Dad’s best friend forgot him. She could no longer talk to him about the issues, critical or trivial, that filled their lives. And that was OK with her; she wasn’t interested any more. Dad, on the other hand, was slowing starving for “normal.”

Who would dream that almost-daily trips to the grocery store could be so beneficial for an Alzheimer’s caregiver?

Thanks to them, Dad became a social butterfly.

When we arrived at the store, Dad always headed straight for the door. I stayed back with Mom, helping her out of the car, taking her arm—or her waist or shoulder or whatever she allowed me to hold on to that day—to keep her steady during our trip across the parking lot.  Dad knew we’d catch up, so he moved ahead with speed and purpose. And a smile on his face.

Even from the parking lot, I could see him through the glass doors, talking with the greeter of the day. All the store greeters knew Mr. B, and he knew them. By the time Mom and I entered, he was asking about how that grandson was doing at UT or sharing his prediction that of course the Cowboys would win that weekend.

Employees in various departments waved as Dad led our slow caravan through the aisles of the superstore. Sometimes they hailed him from a distance. “Mr. B! How you doing?”

“Doin’ great!” Dad boomed back. “Thanks a lot, ole partner!” His bright blue eyes probably couldn’t quite make out whether it was Jim or Charley working in produce that day, but “ole partner” worked in any case.

The women would tell him how nice he looked and he returned their compliments. Sometimes other “regular” shoppers said hello or made a joke like, “It looks like you own this place!” Dad blushed, and his smile grew wider.

But occasionally, with the utter unpredictability that characterizes Alzheimer’s, the sporadic conversations irritated Mom. She would frown and tell Dad to “Come on!” Sometimes she grew angry enough to steer the cart on a collision course with someone or something, didn’t matter what, just to let us know she wasn’t happy. On those occasions, I used my body to herd the cart, and her, away from the area. Though it was seldom necessary, I was ready to walk back outside and sit with Mom in the car so Dad could keep up with those casual but meaningful relationships.

As Alzheimer’s took away more and more of Mom’s mind and memories and emotions, she noticed less and less, I think, how isolated she had become. But the same wasn’t true for Dad. The further Mom traveled away from him, the more aware he was that, even with her beside him, he was alone. So his friends at the store—and at the post office and the drugstore and in his neighborhood—were worth all his effort and whatever I could do to protect his time with them.

Dad would have said he was “doing fine; you worry too much, Kathleen. I don’t need friends. I’m fine with just you and your mother. I’m fine!”  But the truth is…I think even Dad saw them as the miracles they were.

Thank You, Lord, for your generous and sweet provision. The friendship offered to Dad by these kind people is not the result of his effort. Instead it is your gift to him, the outpouring of your love. I pray he hears Your concern in their words, sees Your comfort in their eyes, feels Your abiding and powerful and calming presence in their company. All glory to You, who alone can bring such peace out of pain.

“Blessed is he who has regard for the weak; the Lord delivers him in times of trouble.”   Psalm 41:1  (NIV)

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Christmas Carols

The techno tree stood on a maple table in the den.  An unlikely hero, it was less than two feet tall counting the motorized revolving base.  Forest green branches stuck out from its black metal trunk, short and spiky at the top, longer toward the bottom, giving it the approximate shape of a fir tree. A Christmas tree. Totally unadorned save for fiber-optic lights that, at the flip of a switch, glowed in changing colors from the tip of each branch.

My sister gave the tree to my parents in hopes it would brighten a holiday dimmed by Alzheimer’s. Dad had little faith anything could penetrate my mom’s darkness, and I had to agree. As I made daily trips from my home to theirs to help him care for her, I saw no signs this year would be better than last.

A year ago Dad and I made cookies, wrapped gifts, lit lights.  I draped a white sheet over a small table and there, on 250 thread count snow, I arranged the old figures around the shaggy stable.  But Mom had forgotten about the stable and the Baby, and though she ate most of the cookies, she professed to like “those regular ones” better.  The bright gifts evoked so many questions, repeated hour after hour, day after day, eventually I put them out of sight.

So this year, until the gift of the funky little tree, we made no Christmas preparations.  Twelve months had stolen so much more from Mom and filled the vacuum with new fears, more confusion.  The good days were rarer; the bad ones, worse.

Almost forgotten, the tree sat dark until late evening on one of those bad days.  As she sat at the kitchen table with Dad and me, Mom’s face still wore vestiges of the anger that had propelled her through the afternoon.  She perched crooked and stiff on the edge of the chair.  Her feet shuffled like children who couldn’t be still.  Our spirits were brittle with fatigue; the house, chill with despair.  Perhaps it was desperation that turned Dad’s gaze out of the kitchen, here, there, away from the heaviness that shrouded the table.  Then his feet followed his eyes into the den.

“Where are you going?  What are you doing?” Mom growled as he walked toward the tree.

Dad said nothing, only reached down to flip the switch on the plastic base.  From the fiber-optic branches tiny beams of color, delicate as starlight, ventured out across the room.  Green, blue, violet snowflakes floating into the grey air, across the brown carpet, dancing on the furniture.

With a tiny hum, the tree turned ever so slowly, and ever so slowly Mom relaxed.  Her feet were still.  Her shoulders sagged into the back of the chair.

“It’s a Christmas tree, honey,” Dad said, almost whispered, afraid, as I was, to break the sudden calm.  “Do you like it?  It’s a Christmas tree.”

Just as softly, I began to sing.  “O Christmas tree, O Christmas tree, how lovely are thy branches….”

The old German carol.  My mother’s favorite.  In the time of my childhood when the first strains of Christmas music opened my heart like a jewelry box ready to receive all the bright treasures of the season, I waited each year with great anticipation for Mom to hear “her” carol playing on the radio.  Because when she did, she would stop what she was doing and sing along, while my sister and I watched and smiled in wonder at the change in her face.  Every feature would soften as she lifted her chin and raised her eyes to a long ago past.  I could feel the room grow warmer as she sang.  And then always the same ending: “We learned that song in school.”

It was like a story to us, Mom’s singing and her words, “We learned that song in school.”  Most of the story was told in the look on her face and the emotion in her voice, with the outcome always the same:  love for the fair fir tree.  Peace.  Happiness.

Apparently not even Alzheimer’s could steal that remembrance from Mom.  Somehow, evoked by the techno tree with its sweet hypnotic light, the melody of the old carol had survived in her memory, like a gift still wrapped in bright hope.

“O fir tree dark, O fir tree fair…” I sang on to her.  Then at the end, “You learned that song in school, right?”

And the gift unwrapped itself on Mom’s face.  Anxious lines opened into softness and, subtle as candlelight, her eyes flickered in recognition of…what?

Peace: the heart of the Christmas story.  A tree, a Gift.  The sweetest story.  The oldest, the eternal carol.

Glory in the highest.

Thank You, Father, for Your miracles of love, given at Christmas, given all year long. You gave us life, and You gave us Your Son. Your Son gave us new life, and He gave us His Spirit.

And when we cannot even imagine the magnitude of those gifts, You say, “Look here, Child. Look at Christmas. This Christmas. This evening. A tree that broke the hold of dementia. A song that opened a mind and a heart. Light and melody that brought peace and joy. That is how much I love you. Believe it: that is how much I love you.”

I believe, Father. Thank You.

“My soul glorifies the Lord, and my spirit rejoices in God my Savior….For the mighty One has done great things for me—holy is His name” (Luke 1:46-47,49  NIV).

Hair and Hats and Other Surprises

We simply never know.

Caregivers never know how a day will turn out. How an event will end. What effect any one action may have on a loved one with Alzheimer’s.

What we do know is that whatever affects our loved ones and their lives also affects us and our lives. We try to expect the best and avoid the worst. We think we know the difference.

Sometimes, though, we’re surprised.

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Even before Mom had Alzheimer’s, she wasn’t adept at cutting hair. As a child, I  always got down from her hair-cutting stool with bangs that looked like elbow macaroni. Mom would wet them with a comb dipped in water and then cut them again and again, trying to get the length even from one side to the other. After her scissors did their work, my naturally curly hair did its own thing: as the bangs dried, they curled up and gathered like macaroni artwork at the tip-top of my forehead.  “They’ll grow,” she always told me. “They’ll grow out.”

But after Alzheimer’s took over Mom’s life, after she virtually shaved her own hair with a pair of desk shears, Dad and I could only tell her the same thing: “We can’t do anything to fix it. Your hair will have to grow.”

We did buy her two hats. She liked them for a couple of days, then refused to wear them.  Soon they disappeared. Completely.  Many things Mom claimed to dislike disappear completely.

But within a couple of weeks, we saw the miracle. We witnessed the wonder that redeemed the Hair Massacre:

Mom’s self-inflicted haircut accomplished what all our meeting with and explaining to and questioning of doctors could not.

The family doctor assigned to my parents at the senior healthcare center had decided—out of a wealth of experience, I’m sure, but experience that did not include living with this patient and her pain and her moods 24 hours a day—that the symptoms he saw in his office were not those of a depressed or anxious woman. He decided Mom had Alzheimer’s.  And the symptoms he had not yet seen?  The ones Dad and I brought to him verbally and also written in careful detail?  He simply refused to consider them.

Until he saw the haircut. About two weeks after the Hair Massacre, Mom’s regular doctor’s appointment found us once again persuading and prodding her into his office.  Once again her angry and hostile behavior evaporated as we entered the medical building.  Once again Dad and I came armed with written questions and descriptions of Mom’s anxiety, paranoia, and anger. Once again we were prepared to plead for the doctor’s help.

We didn’t have to say a word. When the doctor walked in and saw Mom’s hair, his face registered instant alarm.

He looked at my father and asked, “Did she do this?”

Dad just nodded.

Mom sat smiling while the doctor asked Dad questions about her behavior. Dad answered patiently, and when the questions slowed, handed the doctor the sheets of paper we’d brought. Instead of stuffing them into the back of her file as he’d done twice previously, the doctor read them, asking for clarification or more details, taking notes. Then he told us he was prescribing a strong antidepressant. He emphasized it would do nothing to improve her memory or lessen her confusion, but it should relieve her anxiety and brighten her mood somewhat. He went on to explain that a geriatric psychiatrist came to this office once a month; he would set up a time for him to see my mother.

The turn-around that took place in the examining room was a wonder to experience. After a year of trying to get the doctor’s attention—to make him begin to treat my mother, not just the symptoms he witnessed—it was neither me nor my father who made him see the light. It was Mom and her haircut. Mom and what the doctor called her “self-destructive tendencies.”

I call it a miracle. Before she ever took one of the little pills that would prove so critically important in improving the quality of her life and ours, I knew it was a miracle that had gotten us to this point. Only a miracle could take the pain and madness of that afternoon in front of the bathroom mirror and turn it to some healing use.

Using heretofore undiscovered skills, I cut Mom’s hair from that day on, gently and playfully ambushing her with a burgundy plastic cape and tiny silver hair shears on mellow afternoons as she sat at the table chuckling at my father’s corny jokes. Those afternoons became more plentiful after she began taking the antidepressants.

And the doctor? The change in him was dramatic, too. He realized, I guess, that his short visits with Mom in his office weren’t giving him an accurate picture of her health. So, at last, he accepted input from all three of us. Finally he was on our team.

A miracle.

Remind me, Father, that Your love and Your power are tenderly working for Mom. In every circumstance, joyful or painful, let me see You here, with us, protecting, redeeming, again and again.

The Lord is righteous in all His ways and faithful in all he does. The Lord is near to all who call on Him, to all who call on Him in truth.   (Ps.145:17-18   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)