Sometimes They Forget

When Alzheimer’s Affects Hope

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She is not the same person I once knew. My mother — the strong, outspoken, active woman who raised three children. Often harsh in her strict disciplinary practices, she was just as hard on herself.

But it was resilience that moved her from childhood poverty to a successful nursing career, a happy marriage and a fulfilling life.

Until the Long Goodbye struck and Alzheimer’s changed her personality.

I do not remember many smiles on my mother’s face. But now, she sits in a wheelchair with a constant grin, revealing the gaps where teeth once anchored.

She knows no one, so every greeting is new. She bears no burdens, because she prepared well. Others handle all the stresses of life. A Bible rests on her lap, but she cannot locate her favorite verses.

She is deaf, so communication is handled with a white board. But she cannot respond. No longer writes even the simplest of sentences. She answers “Yes” or “No” to written questions.

Yet her smile remains. Her visage content. One day just like the next.

In Prayer in the Night, author Tish Harrison Warren admits that some seasons in life might include a variety of afflictions — Alzheimer’s being one of them.

Warren notes that Jesus cared about those who bore chronic pain and constant affliction. He healed some. Left others to return to the leper colony, the sick bed, the beggar’s spot near busy markets.

Warren surmises that God Himself “Suffers with the alcoholic, the homeless kid, the Alzheimer’s patient, the bipolar client in a manic spell.”

God sits with us in our pain, understands our need for companionship and offers His hand of comfort as we struggle.

Perhaps my mother smiles within her shadows because she feels One beside her. Maybe she even sees her Savior on a spiritual level the afflicted ones know so well.

Perhaps her contentment comes from knowing He counts down her days and will never leave her. Maybe the personality change is more of a deeper level of partnership — of two souls acquainted with grief and the sorrows of life yet looking forward to a better place.

Within that possibility, I find hope as I stare at the pictures of this unknown woman — this version of the mother I once knew.

Perhaps in a strange way, this is her best season, her days of intimate knowing and divine purpose. Her night that will lead to a brighter day.

©2021 RJ Thesman – All Rights Reserved

For essays about caregiving, check out Sometimes They Forget: Finding Hope in the Alzheimer’s Journey.

7 Holiday Tips for Caregivers

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DISCLAIMER: Because COVID-19 has changed the scenario in many assisted living facilities, some of these tips will need to be modified.

The calendar reminds us how deep we are into the holiday season. Our waistlines expand while the stresses of family dynamics emotionally stretch us.

As much as we enjoy the family time, the abundance of good food and the reminders to be grateful — we also need to remember how stressful this time can be for someone who suffers from Alzheimer’s or dementia.

How can we best help our loved ones survive the holidays? How can caregivers find some joy during this stressful time?

Trim the Food Responsibilities. One year into her Alzheimer’s diagnosis, Mom tried to figure out a recipe. She wanted to feel part of the festivities but even finding pots and pans proved to be difficult.

As we watched her struggle, worry about the cost of groceries and wonder if she had made her salad — hundreds of times — we realized it was time to stop expecting Mom to cook.

Even if your loved one has a favorite recipe, relieve her of the stress of making it. Give her a simple task and make it together.

Plan Ahead for Shopping. Be prepared with a list and know the easiest way to get in and out of the stores. Forget about Black Friday shopping — too many people, too much noise and parking places are limited.

Be patient. Take plenty of time and be prepared to answer many questions. If possible, buy everything in one store. Then go home.

Better yet, sit down with a laptop and show your loved one the pictures. Then order everything online.

Include Favorite Foods. Even though her appetite has changed, Mom still wants pecan pie. One of my holiday duties includes buying a pecan pie for Mom. I recommend the frozen variety. No fuss.

When we walk into the farm kitchen, Mom always eyes the dessert table. She may not say anything, but I know what she’s looking for. “I brought your pecan pie, Mom, and the first piece goes to you.” Then I dress it with a generous dollop of whipped topping.

Every year, Mom replies, “I DO love pecan pie.” Someday even this sentiment will disappear. Enjoy blessing your loved ones with their favorite foods.

Plan an Activity Together. Although sending Christmas cards is becoming one of those forgotten traditions, my mother’s demographic still considers it a holiday courtesy. She loves receiving her cards.

Remind your loved one who the senders are or tell a favorite story about the person behind the return address.

Be prepared to look at the cards several times during the holidays and tell the same stories. This repetition is part of the Alzheimer’s process. Someday you’ll be glad you took the time to do this simple task.

Be Careful About Timing. If you check your loved one out of assisted living for the day, check back in before dark. As the sun sets, Alzheimer’s patients often experience Sundowner’s Syndrome. They may pace, say the same words over and over and exhibit anxiety.

They feel safer in their rooms before dark, so time your meals and activities accordingly.

Travel is NOT for Everyone. Although we all want to be together during the holidays, travel out of the comfort zones is difficult for the Alzheimer’s patient: several hours cramped in a car or a plane, strangers, noise, unfamiliar surroundings, different types of foods and smells.

It makes more sense to hire a caregiver and let your loved one stay home while you join the rest of the family.

Avoid the false guilt that says you cannot leave for a day or two. Yes, you can. Taking care of yourself is one of the best ways to make it through the marathon of caregiving.

Take a break and be with your family.

Gift-giving. None of us needs more stuff, least of all — the Alzheimer’s patient. Keep the gift-giving simple.

Try these suggestions: a stuffed animal, a baby doll (especially for the women), a pretty picture for the room, a picture of family members with their childhood photos inserted next to the adult photo, a favorite piece of candy, a comfortable sweater.

Be aware that some gifts may disappear. Mom constantly loses things. Last year, I bought her new sheets for her bed. Then I put them on for her. No chance to lose them.

One gift that always works is spending time with your loved one, a hug and a kiss, a “Merry Christmas. I love you.”

Do it while you can.

©2020 RJ Thesman – All Rights Reserved

For a more substantial list of helpful tips, check out Holiday Tips for Caregivers, available on Amazon and Kindle.  

When Guilt Interrupts Hope

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As difficult as it is to admit, the Alzheimer’s journey often involves a measure of guilt. Friends might try to soothe with platitudes, reminders that false guilt is not real. Nonetheless, the inner critic continues to scream, “You should have done more!”

During the years when Mom was in assisted living, it was easy to drive the 250 miles to her town and sit with her for a while.

At first, we took walks around the lake or up and down the halls. We sometimes shared a cup of coffee, talked about the grandkids or focused on happier memories.

Sometimes I watched the clock, waiting anxiously for the time I could escape — leave the facility and meet up with family for a nice dinner or browse through the mall and try to forget my mother sat alone in her room. Comforted myself with an empty purchase.

On some level, I knew those years and those visiting opportunities would someday end. But I never could have predicted the trauma of 2020, and what COVID-19 has stolen from us.

Visits in person are no longer possible. In fact, Mom has recently weathered a positive test for the virus. No symptoms. Her isolation now in the past.

This time.

But even window visits are few, only allowed when the authorities can set them up. And my travel for 250 miles is no longer easy or even possible as I’m dealing with my own health issues. A sprained hamstring that prevents travel for longer than an hour.

Now I remember back to those days that seemed so cavalier, sitting in the room with my mother, answering her repeated questions, giving her a hug and a quick “I love you” when I escaped.

I, blessed with the freedom to leave.

COVID has stolen the opportunity to keep the relationship alive even though Mom no longer knows who I am. I still know her, so I feel the guilt of leaving to continue my easy life — while she remained behind.

I have no idea when or if I will see my mother again. I can only hope that on some level she knows her family still cares for her.

So I pray for grace and transfer my need for hope to this woman who sits alone, unaware of COVID-19 or of another year that will soon end.

Then I remind myself not to give a pandemic too much power and instead — try to let go of the guilt.

©2020 RJ Thesman – All Rights Reserved

If your family is dealing with Alzheimer’s Disease, check out Holiday Tips for Caregivers.

Finding Hope When Prayer Lags

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prayer -woman-sunsetSometimes prayer comes easy and feels like a special connection with the Divine. The words flow with a spiritual electricity. We believe God has indeed heard us, and something miraculous will happen soon.

But other times we struggle to know what to say. The words stick in our throats, and God feels far away. We can’t even fully imagine how anything good can come out of this frustrating conundrum.

That’s where I am now. I don’t know how to pray for my mom.

She’s no longer in assisted living, not even in the Alzheimer’s unit. Now she lives in a bed in the nursing home wing, shares a small room with another woman we don’t know.

This situation is specifically what I prayed would never happen.

Mom is living, but not really. The pain from her twice-broken hip and a broken shoulder. Her right arm affected — her dominant side.

She cannot feed herself and doesn’t want to eat anyway. She fights those who try to get near, because every time they move her, the pain increases.

Add to this horrific scene the fact that none of us can be with her. Because of Covid-19 restrictions, her nursing home is still in Lockdown. The already isolated elderly are now imprisoned within solitary confinement.

Mom does not understand what’s happening in her world. She just feels the pain of loneliness and physical hurt.

Does she think we have abandoned her?

What kind of life is this? How should I pray?

So far, God has not chosen to free her from the pain. He has not come to her room, touched her broken limbs and made them whole again.

I often pray that he will be close to her, hold her near his gracious heart and whisper consolations only she can understand.

But I don’t know if he’s doing that, if he’s answering my prayers.

If I pray for her final healing, for complete release, I am asking God to stop her heart and take her to heaven — to end her suffering forever.

Yes, I have prayed those words. Then felt immediate guilt.

I don’t want to be an orphan. I don’t like this season of life. I hate that my mother is going through this — alone.

So how do I pray? How can I stay in hope when my prayer lags?

What is best for this woman who always wanted the best for me?

Scripture tells us that Jesus has a job in heaven. He, too, is working from his home. He’s praying for us (Hebrews 7:25).

So I swallow my tears and ask him to pray for Mom.

And when I cannot even utter those words, I revise the last verse of “Away in a Manger” and hope God understands the cry of my heart.

“Be near her, Lord Jesus, I ask you to stay

Close by her forever and love her, I pray.

Bless now my dear mother in nursing home care

And take her to heaven to live with you there.”

 

©2020 RJ Thesman – All Rights Reserved

Hope’s Introduction

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This blog began as therapy for the Alzheimer’s journey in our family. Then it slowly morphed into more posts about hope.

But how did it all begin? What was the impetus for sharing my words in cyberspace?

The thief first appeared as a slight blip on the memory screen. A word forgotten, a key chain misplaced. We laughed — at first.

Then more and more items were misplaced, numerous words forgotten until finally our parents’ identities disappeared.

We no longer laughed. Instead, we sought out doctors and resources — someone who would tell us why Mom acted so strangely, why Dad could no longer drive.

Then the dreaded diagnosis: dementia for Dad, Alzheimer’s for Mom. The Long Good-bye.

The memory thief smirked. He had completed his work and left us bereft.

Sometimes our precious ones forget. Eventually, they no longer remember those they have birthed and raised.

Dad was a gentle man, a Mennonite farmer who lifted hay bales all day and threw them into a truck, then spent the evening softly strumming his guitar.

Henry, often called Hank, was soft-spoken and so introverted that when he prayed or gave advice — everyone listened intently.

How I wish I would have written down more of his wisdom before he became forever silent.

He was a man of faith, with a history of athleticism. A triathlete who was scouted by the Yankees and became a basketball legend at Phillips University in his hometown: Enid, Oklahoma.

Yet not even his faith nor years of exercise and outdoor living could save him from the memory thief.

Like a good farmer, he took care of the land and his home. One November day, a fire threatened to destroy the farmhouse.

He beat out the flames until he was sure everything was safe, then stumbled outside to gulp fresh air.

That’s where Mom found him, with his shirt hanging off his chest, deadly burns all over his body.

After four months in the hospital, several surgeries, daily debreeding sessions, graftings, sleepless nights, scars that roiled our stomachs, the acrid stench of putrified flesh — Dad was finally released.

He returned home, unable to remember how the tractor made ruts in the plowed field or how to create chords on his guitar, why the cows didn’t come home without the gentle farmer calling them in.

“Trauma-induced dementia,” the doctors said. “Keep him at home as long as you can, but be prepared for a difficult journey.”

Mom, the nurse, retired from her job. They moved from the farm to town, into a house that could accommodate a wheelchair, if needed.

“I’ll never put him in a nursing home,” Mom said. She became his caregiver, daily, monthly, for ten long years.

My sister moved home to help. Together they fed him, bathed him, rolled him over when he graduated to the hospital bed.

The silencing of his wise advice cut deeply into our lives, and my heart ached when I visited.

We connected through music, so I sang to him. A spark would kindle in his eyes, especially for his favorite hymn, “Blessed Assurance.”

Then one April, when the spring tulips erupted into bright yellow and purple blooms, when the promise of life budded everywhere — the spark disappeared.

I knew it would not be long.

In May, he graduated to heaven. A release for all of us, especially for Dad.

      Sometimes death is a relief.

 

With her mate of 54 years buried, Mom devoted herself to volunteer work. She served meals to the hungry and counted Bingo cards at the nursing home.

One Thanksgiving, she said, “I’m so glad I’m not in a nursing home — yet.”

I wondered later if she had a premonition.

She began to misplace the pots and pans. She safety-pinned her house keys to the waistband of her pants, just in case she forgot how to get back into the house. She parked her car in the same spot at the grocery store so she could find it when she came out.

She coped so well, it took us a while to figure out something was drastically wrong.

Then fainting spells, hard falls, congestive heart failure and a pacemaker. The doctor said, “She can’t live independently anymore. Alzheimer’s and an inoperable benign brain tumor.”

We had already contracted with a beautiful assisted living facility. But she fought us. “Why are you putting me here? There’s nothing wrong with me.”

We lied and hated it. “It’s only for a little while, Mom. Rehab after your pacemaker surgery. The doctor ordered it.”

A partial truth is still a lie.

She lived in assisted living for eight years and now has graduated to the Alzheimer’s wing. Confusion deepens. No more fun trips to the mall with her best friend. No more biscuits and gravy at Braum’s. No more crocheted projects.

She sits quietly in her chair, often in the dark, pretending to read. Not comprehending the words.

Sometimes they forget and sometimes life forces them to forget.

No matter what the situation or the health issue, caregivers are left to figure out a new normal — to search for hope and continue to love while dealing with this brutal disease.

We can find hope in the Long Goodbye. We learn patience and strive for joy. We treasure each moment we can still hold a hand, sing a hymn or stroke a forehead.

Sometimes they forget, but as long as we remember — their legacies continue.

©2019 RJ Thesman – All Rights Reserved

The above excerpt is from my book Sometimes They Forget, available on Amazon and Kindle.

Hope Finds Its Space

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When the transitions of life change our circumstances, it may become more difficult to discover hope.

Recently, Mom transferred from assisted living to the Alzheimer’s unit. A necessary change, given her cognitive impairment. Still, for the family she no longer recognizes, it was a clear reminder of the devastation of this disease.

Grateful for the beautiful and efficient multi-level facility where Mom lives, I still wanted to save her — to save all of us — from this fate.

Once again, Mom’s space has disappeared.

A much smaller room, although she still has her familiar furniture: the dark mahogany dresser, the comfy glider/rocker, the end table my sister embellished with decorative tacks, the corner etagere that displays family pictures.

A decreased closet size. No more walk-in with plenty of room for various wardrobes. Mom makes simpler choices these days: easy-to-pull on slacks, polyester tops, socks and shoes. Most of them in her favorite pastel colors. No jewelry. No accessories.

My own wardrobe contrasts with multiple colors and textures, plenty of bling, a few funky hats. Plenty of choices.

But grief threatens for the future. What if my space disappears? What if I can no longer enjoy putting outfits together, find the best bargains, check my reflection in the mirror?

That loss would affect my enjoyment of life.

Mom’s brain no longer calculates the spatial changes. She sleeps, eats and does the activities they tell her to do. Totally compliant, this once fiercely independent woman.

I want to scream at the injustice of life.

One big change in Mom’s new “home” is the bed. No longer able to relax in the daybed my siblings moved from her house, she will now sleep in a hospital bed.

If her nursing mind was capable, she would recognize this change as decline.  More dependent on others to make sure she doesn’t roll out of bed, doesn’t wander during the night.

The change of beds signals the regression of Alzheimer’s and other forms of dementia.

The next bed will be a confinement unto death. The beds in the nursing home wing are for patients who can no longer walk. They lie supine, hoping to be spared bed sores as each sunset leads them toward a final resting place — the silk-lined coffin.

Mom used to love the wide spaces of the farm. She hung sheets to flap on the clothesline, held the pins in her mouth and gloried in the cerulean skies of Oklahoma. Her hubby tilled another rotation in the field as she watched. Her children either finished chores or prepped homework for another school day.

It was a good life — spacious in its beauty.

But now, the transition has stolen more freedom and set in motion another arrow toward the final target.

So how do we find hope in such a sad prognosis? By looking at the space to come.

When Mom is finished with her final transition on earth, she will fly to a timeless world with no margins or imitations.

She’ll be free to visit with Dad and her parents or chat with a biblical character she once read about. Maybe she’ll meet one of the authors whose books she read.

Perhaps she’ll step into another dimension, travel to Mars or float above her children and silently cheer us toward the same goal.

Space and time will do its disappearing act rather than the facility where Mom currently lives.

And in the end, hope will take its space in all our hearts when this disease says its final good-bye.

©2019 RJ Thesman – All Rights Reserved

For more essays about the Alzheimers journey, check out Sometimes They Forget.

Hope Survives at Home

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Something about houses attracts the hope within.

Tudors with their brick facades, happy bungalows — especially the ones equipped with porch swings, cottages framed by specialty gardens.

The memoir I am writing is focused around the theme of various houses in which I have lived.  Maybe I should have become a realtor.

The house Mom bought, then had to leave behind, is a typical Oklahoma ranch. When dementia first began to squeeze its nasty tentacles around Dad’s personality, Mom felt as if she needed to move him off the farm. Into the safety of town and one-level housing.

Neither of them could continue to fully operate within the realities of farm life.

Dementia stole Dad’s vocation from him, and Mom could no longer handle the hard work required in the country life she loved.

They settled into the brick ranch and lived securely as Mom nursed Dad. My sister joined them and helped Mom for 10 shadowy years. Then on a gentle spring morning in May, angels carried Dad away.

Mom stayed in the ranch, unwilling and unable to move anywhere else. In fact, she underscored her idea of the future when she announced, “My next move will be to the cemetery.”

If only it had been that simple.

The ranch soon became the forecaster of Mom’s next move as she began a downward spiral. She forgot the location of her pots and pans, threw away important bills and documents, counted her medications numerous times before swallowing.

It was in the ranch house where Mom passed out, her brave heart needing the extra pulsing of a pacemaker, her head bleeding from where she banged it when she fell.

When she had to leave, a series of ambulance rides transported her from the hospital to the nursing home rehab and later to her studio apartment in assisted living.

Meanwhile, the sturdy ranch house remained. Mom never had a chance to tell it good-bye.

The yard is its best feature, a surrounding halo of my sister’s plantings: zinnias, pansies and the four o’clocks that actually open at four o’clock twice each day.

I like the house, usually finding a slice of serenity inside when I visit the Oklahoma family. Although it is a bit weird to sleep in the bed in which I was conceived, I gaze at pictures on the walls and remember when we gave them to Mom and Dad.

In the closet, I hang my clothes and touch hangers that held Mom’s winter coat, a suit she no longer wears, a knit shirt with embroidered daisies — some of the threads barely hanging on to their frayed outlines.

Mom’s brush and comb still wait on the dresser, flanked by doilies her mother crocheted, their white loops now fading into the yellows of the past.

The massive mahogany furniture which none of us will want — a pronunciation of Mom’s signature style.

Mom never seems to miss the ranch house. She only remembers the farm as her home where she raised three children, cooked harvest meals and hung clothes to flap on the line — fabric silhouettes of each person in her family.

The personality of the ranch house follows me whenever I drive away. I am left with a sense of gratitude that my sister is safe within its walls and I know — in that particular house, our family made an imprint on the earth.

Homes become the measurements of years as each place serves a purpose. Within our respective homes, we wait for that final call to a home that contains no walls, needs no paint and provides the freedom where our spirits forever roam.

©2019 RJ Thesman – All Rights Reserved

Read more about the places and people of hope in Hope Shines, also available in Large Print.