When Alzheimer’s Affects Hope

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.

Finding Hope When Life Unravels

As I entered one of the big box stores, I knew time was fleeting. The local government officials had just closed all the restaurants. All major events canceled. How much longer would it be possible to buy food and necessary items?

The Coronavirus jack-knifed us into what felt like a pre-apocalyptic world. Empty shelves. Shoppers avoiding each other, keeping their social distance. Hygienic wipes in my pocket to kill the germs on my cart, my hands, the number pad.

What in the world happened to our comfortable norm? The virus and its effects showed us how fragile life can be.

So how do we find hope when life unravels?

Focus on God instead of the Problem. During other emotional apocalypses in my life, problems have seemed insurmountable.

A period of 14 months with no job and no unemployment insurance. Cancer scares for my son and me. The medical tests alone were enough to saturate our emotions with fear. A father dying slowly from dementia, a mother locked in the shadows of Alzheimer’s. Miscarriages. A toxic job environment. Multiple abuses over a lifetime.

When I was training to become a Stephen Minister, we were assigned the task of writing about the losses in our lives. I filled my 3×5 card front and back.

Another minister saw it and said, “You win.”

“I don’t think so,” I responded.

During each of those problems, every time I felt overwhelmed, I tried to focus on God rather than the situation. I filled my journal with all the attributes of God that I had personally experienced. My Bible was colored with highlighted verses about God’s love and care.

Sometimes I spoke out loud to the problem itself. “Go away. Leave me alone. I will trust in God.”

So that’s what I’m doing now, during this Covid-19 outbreak. I’m filling my journal with all the ways God is protecting us. My Bible reflects the colors of new highlighters and more verses talking about God’s loving care.

And sometimes I shout, “Go away, you filthy virus. Leave me alone fear. I am determined to trust in God.”

Focus on the Lesson rather than the Pain. It is so easy to complain about self-quarantine, to frown about the fact that I am in the “risky” demographic, to worry about the numbers of people dying.

But what can we learn from this situation? How can we turn it into a lesson?

We can pull out the old recipes Grandma used during the Great Depression. The creativity of those depression-era cooks came from a deep survival mode. When food was rationed and winter threatened, they learned how to add more water to the soup, how to make beans the main protein source.

We can do the same.

We are learning how to stay at home and be families once again. The kids are out of school. Teach them how to cook, how to clean a bathroom properly, how to make a bed with hospital corners, how to change a flat tire.

Gather around the dinner table and learn more about each other. Sing a song. Dust off the board games and play together. Find out how beautiful family bonding can be.

I believe we will also learn how much we took for granted — before the Coronavirus shouted from every internet site.

How easy was it to just pull into a restaurant and order a meal? How many of us fell to the impulse of buying because the shelves were full of wondrous things?

Perhaps now we will be more grateful for the little we DO have. We will learn how it feels to truly be thankful.

Focus on the Future instead of the Present. Hope looks beyond the current problem toward an optimistic tomorrow.

One day, hopefully soon, this virus will wear itself out. We will dig out from our isolation bunkers and find freedom again.

We grieve the loss of so many dear souls today, but in the future — babies will be born, another generation will arise. Healthcare services will normalize, and we won’t be afraid to join groups.

Keep focused on what the new tomorrow will bring. Perhaps our “normal” will be completely changed for the better. Re-energized. More of a dominance on mercy, justice and how to walk humbly with our God.

When all this is over, we may save more for the next crisis and treat small business owners with more respect. Our leaders will keep in place the disaster plans other administrations toiled over. Nobody will hoard toilet paper, because it will no longer be the domineering purchase.

We will be glad to see each other, hug more, appreciate church leaders and healthcare workers who continued to meet the needs.

And the news cycles will underscore baseball games, fashions of the new season and the pride we take in our people. He-roes and She-roes will emerge from this crisis, and we will make more commitments to keep family together, to help one another each day.

One of the verses in my Bible is highlighted, then colored over with another hue, then framed in black ink. I have returned to it multiple times. It has become my mantra when life unravels.

“Hope in God, for I will yet praise him, my Savior and my God” (Psalm 43:5).

Stay in hope. Live in the yet.

©2020 RJ Thesman – All Rights Reserved

The Lenten Season is a time to focus on the Future – on the promise of Resurrection. Who were the women during that period of history? Check out The Women of Passion Week and discover new stories of courage.

Holiday Tips for Caregivers

cover-holiday-tipsThe 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’s eyes always go to 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 junk, 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.

©2018 RJ Thesman – All Rights Reserved

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

Hope’s Introduction

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.

When Hope Lives in Third Person

The inevitable happened. I just wasn’t ready for it – yet.

This summer of 2017 seems rampant with the unexpected.piano keys

A visit with my mother in assisted living and BAM – another unavoidable side effect of Alzheimer’s Disease.

She no longer knew me.

“Hi, kiddo,” her greeting for everyone who enters her room.

As we started talking, I knew the connection had failed. I was being addressed in third person.

“My oldest daughter lives in Saint Louis,” she said. “She works there. I forget what she does.”

“I’m a writer, Mom. And it’s Kansas City – not Saint Louis.”

No response. No affirmation. Just a tilt of her head and a puzzled look. “Who are you married to now?”

Now? As if I’ve been married several times with a revolving door for relationships. Who am I in her plaque-infested brain? Okay. I can play this game. Mom will forget this conversation five seconds after I leave.

“Who are you married to now?”

“Colin Firth.” Might as well make it good.

“Oh. Does he treat you right?”

“Yes. He’s the best.”

“Does he know how to use the litter box?” Somehow Mom switched from Colin to cats.

“Uhm – yes. He’s British and they’re trained to properly use the litter box.”

Before we could continue this ridiculous conversation, Mom was called to the dining room for supper. I decided to sit at her table, even if she didn’t know me.

She introduced me to the rest of the residents, “This is my company.”

Company – a safe term. No connection. No relationship.

A sweet lady on my left asked, “Do you play piano? Could you play my favorite song?”

I wondered if she asked everyone that question or did she somehow assume that I knew how to play. She adjusted her walker and I followed her to the piano. “Please play ‘There’s Something About That Name’,” she said with a slight catch in her throat.

Give this lady some joy and play her favorite song. Maybe it will help erase the fact that my mother is unaware of who I am, carefully spooning into her chili and cornbread mixture.

So I started playing the song, then joined in a decent duet, singing with my new friend. We segued into “Great is Thy Faithfulness” and “Amazing Grace.”

From the other side of the room, I watched Mom rest her chin on her hands, her face a beatific spread of happiness – enjoying the music. Did she suddenly remember all the years of piano lessons, as she sacrificed time and money so I could learn what she had always longed to do?

I wanted to memorize her face, to never forget the contentment reflected there – not certain I would ever see it again.

Thank you, Mom, for making piano lessons possible for me. I’m giving joy to this unknown woman beside me, but I’m playing for you, Mom – the daughter you no longer know.

The mini-concert ended and I returned to Mom’s table. Another woman asked her, “Is this your daughter?”

Mom just shrugged.

We walked back to her room, and I kissed her goodbye. “I’ll see you soon.”

“Okay,” she said, already punching the TV remote, oblivious as to what “soon” means. It will be months before I make the trip back to Oklahoma from Kansas City.

Not Saint Louis. Not so soon.

And when I return, will a blip of memory reappear? Or is the knowledge of who I am gone forever?

Have I mentioned how much I hate Alzheimer’s?

©2017 RJ Thesman, Author and Writing Coach

Sometimes They Forget

 

How does a family deal with caregiving 24/7? What does the Long Good-bye involve and what are some practical tips for dealing with it? “Sometimes They Forget” helps us find hope as caregivers in the Alzheimer’s Journey. Order your copy here. 

 

Hope Fills in the Gaps

Stuck. Between the third and fourth chapter of the gazillionth revision of my novel. Somewhere a segue exists but currently – I can’t find it.

I know it will come – somewhere over the rainbow. But the frustration of the moment calls for a break from writing and a massive piece of comfort chocolate.

AsMind the gap I reflect on life in general and writing in particular, I realize life is filled with gaps. Those years between holding a newborn and watching him walk across the stage to grasp his diploma. A quickly-passing gap. Overwhelming emotion at both ends of said gap.

The gap between the germ of an idea and holding the published book in hand. Multiple revisions and gnashing of teeth. Still stuck between chapters three and four.

But the most telling gap underscores the fragility of life – imaged perfectly in cemeteries. A name engraved on the headstone. A birth date.  A death date.

But it is the gap between those two dates that determines the legacy of that life. What occurred to that person and because of that person during that gap? How many people did she influence? How many friends did he make? Who will mourn the presence of the owner of that gap?

I bring out my journal to analyze my thoughts. Think of the people whose gap moments affected my life: parents, siblings, perhaps even ancestors who prayed for me – folks I have never met. I know them only through faded black and white photos and those headstones in the cemetery.

Teachers. Writers – oh yes – the numbers of writers who have influenced my life and also my calling to write. Innumerable.

Pilgrims within and beyond my family. My  students through the years. My clients now – how much I learn about writing from the actual process of coaching writers!

My son. The brave one who beat cancer. We celebrate every July 4th and believe the fireworks are for him.

The people I know who live with chronic pain and complain far less than I about their daily struggles. These warriors encourage my own gap-living and remind me to endure, to persevere, to grit my teeth and keep trying.

Although we celebrate births and mourn deaths, we don’t pay as much attention to the gap in between. Yet that gap is where hope exists, where it is nurtured and grows, where it expands to affect other gappers.

Perhaps we need to do more of this – to celebrate each other while we have life. To invite another gap-traveler for coffee, to toast each other and determine we will pray for each other. Maybe we need to underscore reasons for more parties, for cake and ice cream just because we love the taste of life.

Should we not celebrate with writers, artists and every day workers who persevere and heroically make it through another day?

And there it is – suddenly the segue I wanted, hiding within the paragraphs of journaling. A nugget of hope within my own gap.

This moment will not be engraved on my tombstone, “On this day in the 2017th year of our Lord, RJ Thesman figured out a way to move from chapter three to chapter four.”

But in the totality of my gap life, I believe the divine One will cheer for me. He will understand the joy I feel in moving forward with my words.

And when he reviews this life with me, he will remind me how important it was to find that segue. His whisper of “Well done” will be my trophy.

©2017 RJ Thesman, Author of  Sometimes They Forget and the Reverend G Trilogy

Hope Misses Mom

This is the first year I will not call her on Mother’s Day.Mom

What’s the use?

She cannot hear what I say. She will not remember it is Mother’s Day. She does not care about the passage of time.

Each day is the same as the day before. She waits in the world of Alzheimer’s where time moves backward. Clarity only occurs in the distant past.

She will remember me as a child, finishing my chores, then perched in my tree with another library book or my five-year diary.

But thankfully – although we are hundreds of miles apart, I still remember her. I have already sent the frilly card. On Sunday, I will also send my thoughts and prayers through the universe.

God, oh God, you will whisper “I love you” to her – won’t you?

This Alzheimer’s journey is such an ironic place of memory versus reality.

I could use this space to laud her for years of mothering, for practical lessons taught and for the courage she always displayed.

Appropriate adjectives for her life would include: strong, resolute, determined.

These traits still show up when she occasionally complains that someone has stolen her teeth or broken into her home.

More of the hysteria of dementia.

Since the present is so unpleasant, we have only past memories to connect us.

My sister will read my card to her. Mom may wonder at my signature. She will not fathom that who I miss is not the present mother but the one who became confidante, friend and encourager.

I am grateful her brave heart still beats. The connection still exists.

To lose a mother is to cease hearing the heartbeat that nurtured us in the womb.

To lose the one person who is eternal cheerleader, even when we both age beyond the boundaries that held us close.

So I will pray for her on Mother’s Day, knowing the eternal Abba will hold each of us close.

And I will look at her picture, miss the woman she was, even as I hope for Alzheimer’s end.

©2017 RJ Thesman, Author of “Sometimes They Forget” and the Reverend G Trilogy