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.

7 Holiday Tips for Alzheimer’s Caregivers

Alz awarenessHow should we deal with our Alzheimer’s loved one during the holidays?

The calendar reminds us that we are deep into the holiday season. Our waistlines are expanding and 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 for another year – we also have to remember how stressful this time can be – especially for someone who suffers from Alzheimer’s or dementia.

So here are seven tips to remember as we move into the holidays:

Don’t expect a dementia or Alzheimer’s loved one to make any food.

One year into her Alzheimer’s diagnosis, Mom tried to figure out a recipe so she would feel like she was part of the festivities.

But as we watched her struggle to find pots and pans, worry about the cost of groceries and wonder if she had made her salad – hundreds of times over – we realized it was time to stop expecting Mom to cook.

Even if she has a favorite recipe and everyone still enjoys her marshmallow salad or her french silk pie, relieving her of the stress can be a gift.

If your loved one wants to shop for gifts, plan ahead for this adventure.

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 lots of 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 some of your loved ones’ favorite foods.

Even though her appetite is changing, Mom will want her annual piece of pecan pie. So one of my holiday duties is to buy a premade pecan pie and through the years, I have found the best ones in the frozen section at Target.

When we first 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 Cool Whip.

Every year, Mom says, “I DO love pecan pie.” I dread the day when she forgets how to say this one, grateful sentence.

Do an activity together, such as looking through the Christmas cards.

Although sending Christmas cards is becoming one of those traditions celebrated in the past, 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. That’s okay. It’s part of the Alzheimer’s process, and someday – you’ll be glad you took the time to do this.

If you check your loved one out of assisted living for the day, be sure to check back in before dark.

Driving through some beautifully-lit neighborhoods was once a favorite activity. But this idea depends on the level of Alzheimer’s where your loved one exists.

Mom feels uncomfortable outside of assisted living in the dark. Looking at the lights is no longer one of our seasonal pleasures.

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 make sure you time your meals and your activities accordingly.

If you are traveling for the holidays, it is usually not a good idea to include your Alzheimer’s loved one.

Although we all want to be together during the holidays, that pleasure becomes less and less tangible. Traveling out of their comfort zone is difficult for Alzheimer’s patients: 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.

Fight against the false guilt that says you can’t 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. So take a break and drive away to be with your family.

What should you buy for the Alzheimer’s patient?

None of us needs more junk, least of all an Alzheimer’s patient who is living in a studio apartment at assisted living. Keep it simple.

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 photos, a favorite piece of candy, a comfortable sweater.

One Christmas, I gave Mom a wooden cross, made in New Mexico and a bag of her favorite Lifesaver™ mints. She seemed most excited about the mints although the cross was a nice adornment on her wall.

This year I’m giving Mom a hug and a kiss, knowing that next Christmas may be completely different. This year – she still knows who I am, and I am grateful.

Next year – maybe not.

©2016 RJ Thesman, Author of the Reverend G Trilogy http://amzn.to/1rXlCyh