Christmas Remembered

A repeat of last year’s Christmas post. I hope it makes you smile. All caregivers need extra smiles at this time of year. Blessings to you, alleluia, and glory in the highest!

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The techno tree stood on a maple table in front of the windows 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 spikey at the top, longer toward the bottom, giving it the approximate shape of a fir tree. A Christmas tree, unadorned save for fiberoptic 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 the hope it would brighten this holiday dimmed by Alzheimer’s. But my father had little faith anything could penetrate Mom’s darkness.  Thanksgiving had passed like any other day, and the weeks that followed carried no promises of Christmas cheer. 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 and hung ornaments on a small, fragrant fir tree. I draped a white sheet over a side table and there, on 250 thread count snow, I arranged the old figures around the shaggy stable. Joseph, bound by human devotion to a task of divine magnitude, held a pottery lantern in his upraised hand. Mary, all fear erased from her scratched peach face, gazed upon her sleeping Son. Even the donkey and the sad-eyed cow looked to the manger where Jesus, Light of the world, dozed in the flickering rays of Joseph’s paint-chipped lantern.

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. As for the gifts, they evoked so many questions, repeated hour after hour, day after day, eventually I put them out of sight.

So I understood Dad’s doubts. 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 empty spaces 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 the difficult days. As Mom sat at the kitchen table with Dad and me, her face still wore vestiges of the anger that had propelled her through the day. 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, 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’s voice was hoarse and hard.

christmas-treeI watched with her as Dad walked to the table where the metal tree with the bottle-brush boughs stood almost invisible against the heavy drapes behind it. He said nothing, only bent down and flipped the switch on the tree’s plastic base. From the fiberoptic branches tiny beams of color, delicate as starlight, shone on the curtains and ventured out across the room.

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’s voice was low and soft, like the muted sound of church bells traveling over snow. “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. Mom’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 my mother to hear “her” carol playing on the radio. When she did, she would stop what she was doing and sing along. My sister and I watched her, smiling in wonder at the change in her face.  Every feature softened as she lifted her chin and raised her eyes to a long ago past. We could feel the room grow warmer as she sang. When the music ended, she always said the same words: “We learned that song in school.”

It was like a story to us, Mom’s singing and her words. 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. That was Christmas, she taught us, using only her memories and the words of her favorite carol.

Now, in the December of her life, all unaware, Mom reminded Dad and me what the season was about. Apparently not even Alzheimer’s could steal that remembrance from her. 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, the paper unwrinkled by age, the ribbons unfaded by the experiences of a lifetime.

“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 once again 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!”

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And she brought forth her firstborn Son, and wrapped Him in swaddling cloths, and laid Him in a manger, because there was no room for them in the inn.And suddenly there was with the angel a multitude of the heavenly host praising God and saying: “Glory to God in the highest, And on earth peace, goodwill toward men!”  (Luke 2:7,13-14 NKJV)

Welcome, LORD Jesus. You are our Glad Tidings. You know all our joys and our sorrows.  Prince of our peace, hold us while we sing a lullaby, to You and to our loved ones.

 

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.

Night Wandering

After last week’s post about ways to make bedtime easier, a reader asked whether my mother ever wandered at night. (Thank you, Kathy!)

Many people with Alzheimer’s wander, in the day or night or both. Those we care for may walk through the house, up and down halls, restless, as though looking for someone or something. Though that situation can be challenging, it’s far more problematic if the person you care for goes out of the house. The term “escape” is appropriate here. We’re not talking about taking a loved one for a walk—we’re talking about him leaving the house alone without our knowledge. And of course, doing that at night increases the danger exponentially.

My mother didn’t wander. I am fully aware of the magnitude of that blessing.

I have a friend whose mom tried to go out the front door virtually every night. In sheer desperation, her husband, my friend’s father, nailed boards across the door. Finally, one night her mom got a hammer and tried to pull the boards down. Though my friend and her dad managed to take the hammer away, it’s a miracle no one was hurt in the incident.

An extreme case, and a dangerous attempt to keep a loved one safe, and an example to confirm yet again that caregivers always need our prayers. 

There are better ways to approach the problem of wandering. Below I’ve gathered some strategies that worked for other caregivers.

Bob De Marco of the Alzheimer’s Reading Room suggests that wandering sometimes occurs simply because a loved one is restless or hasn’t had enough exercise. Or she may no longer recognize her surroundings, feel lost, and try to find a familiar place.

So one obvious solution is to provide safe ways for your loved one to exercise during the day. The emphasis here is on “safe.”  If you haven’t already taken steps to eliminate obstacles from your living space, now is certainly the time. Throw rugs, electrical cords, even furniture with sharp corners that extend into the room can present problems for all elderly adults, especially those with an unsteady walk and a diminished awareness of their surroundings.

Taking your loved one outside to walk requires the same watchfulness, but it can combine the benefits of exercise and exposure to sunlight. Research has confirmed Bob DeMarco’s observation:

“I believe bright light makes a person who is deeply forgetful (DFP) more awake and alert. They tend to speak more and seem to be ‘more there.’ DFPs seem to have more personality and an improved mood when exposed to bright light daily.” 

You might have to be creative in the pursuit of exercise. Dad and I found that, although Mom refused to walk much at home, if we took her to the store with us, she was happy to walk up and down the aisles behind a shopping cart. The cart steadied her, and the sights, sounds, and smells of the grocery store appeared to be comforting to her.

Other caregivers have noted that “camouflaging” doors—painting or wallpapering doors to match the walls of the room—has made it more difficult for their loved ones to open the door and wander outside. But a caregiver posting on the Forum page of the Alzheimer’s organization in the UK (forum.alzheimers.org.uk/forum.php) described how his father would rise during the night and try to leave the house. When he couldn’t open the door, he would pound on it with his cane. Twice he hit the reinforced double-paned glass in the door hard enough to break it. In this case, other caregivers responded that they were alerted to their loved ones’ rising at night by an alarm system designed specifically for that purpose. The alarm, they explained, was triggered by means of a mat beside the bed or on the mattress of the bed.

The Alzheimer’s Association Help Line will have other suggestions for handling the problem of keeping your loved one from wandering outside. They will also help you register him in a national database that will keep a record of your contact information so that authorities can notify you in case of an emergency.

Short of staying awake all night to watch the person you’re caring for, or hiring someone to do that, none of these methods, I fear, can guarantee success. But many caregivers have told me that, as Alzheimer’s advances, night-time wandering becomes less and less of a problem. As with so many facts associated with this terrible disease, that bit of information is bittersweet at best.

Lord, the task of caregiving is lonely, painful, and often cruel. In the worst of times, we beg You to remind us that we have seen our loved ones smile and we will see it again. Assure us that, even when they no longer recognize us, we’ll see relief on their faces because we’re there for them. We’ll know—You will make us aware of—their thanks and love. Thank You for caring for them always. Thank You for caring for us, too.

I will lie down and sleep in peace, for you alone, O Lord, make me dwell in safety.

(Psalm 4:8   NIV)

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)