Hope Finds Its Space

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.

7 Holiday Tips for Caregivers

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.Cover - Holiday Tips

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 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 Sundowners 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 their 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 Struggles with a Birthday

Exfoliates quoteAll day I thought about her, my mother who lives within the shadows of Alzheimer’s Disease. Celebrating her 88th birthday without me and without any knowledge that she had survived another year.

By mid-afternoon, I couldn’t stand it anymore, so I called assisted living and asked if they could bring Mom to the desk for a phone call.

“It will be just a minute,” the nurse said. “She had such a good day.”

“Really? You helped her celebrate?”

“We partied for all the February birthdays, and your mother had such a good time with our Hawaiian theme. She wore a grass skirt.”

“What?” My mother, the dignified woman with perfect posture, who always carried herself with self-respect. Dressed in a grass skirt?

The nurse continued, “Our activities director decided on the theme. Everyone wore a lei and we had a pretend luau with island music. It was such a great idea.”

I know about activities directors and the impact of their work. Roxie, in the Reverend G books, helps each resident find some type of interest that will increase their sense of significance.

These directors walk a fine line. How do you approach these seasoned seniors who deserve honor even while they have mentally become children? How do you celebrate birthdays for the generation that survived World War 2 and the depression, then rebuilt America and sent their kids to college for the education they always wanted but couldn’t afford?

Now they fidget away their days, shuffling with a variety of walkers, forgetting their names and the children they birthed, aware only of the dinner bell when they file obediently into the dining room and eat silently, then retire to their rooms to turn up the volume on the TV and hope sleep will come soon.

“We had pineapple upside down cake,” the nurse said.

“My mother likes pecan pie. I’ve never seen her eating pineapple anything.” I could not erase the vision of my mother in a grass skirt – this woman who raised me with a no-nonsense approach and a duty-bound responsibility to always do my best and use my gifts to the utmost for God’s glory.

“Oh, here she is!” cried the nurse.

“Hello?” answered a shaky voice.

Too fragile. Not the strong tone I remembered from my visit at Christmas. “Hi, Mom. It’s me, and Caleb is here, too.” I was certain the name of her grandson would trigger a memory.

“Hello?”

“Happy birthday, Mom.”

“Thank you. Hello?”

I ground my teeth and prayed for wisdom. “Did you have a party today?”

“No, I don’t think so.”

She was probably refusing to remember being dressed up like a perky five year-old and forced to wear a stupid grass skirt. I could do nothing to help her. I wanted to scream, but tried a different thought. “Did you have a piece of cake?”

“No, I don’t think so.”

My mother, who used to call me with hour-long conversations, asking about my writing and my work, interested in everything her grandson accomplished – now responding only in mono-syllabic words, phrases she somehow chose from the fog of a plaque-infested brain.

Surely, she would talk to her grandson. “Here’s Caleb.” I handed him the phone.

“Hi, Grandma. Happy birthday.”

“Thank you. Hello?”

“Grandma, it’s me, Caleb. How are you?”

“Hello? What?”

He looked at me, helpless. “Talk louder,” I whispered. “Maybe she can’t hear you.”

“Grandma, we love you.”

“Hello?”

Finally, I took the phone again. “Mom, we’ll see you soon. We just wanted to tell you happy birthday and we love you.”

“Thank you. Hello.” I wondered if all the hello’s really meant good-bye.

Then she was gone, and I imagined her shuffling back to her room, not caring that she is now 88, unaware of 2016, a presidential election coming soon and spring flowers eager to burst through the crust of winter soil.

For a minute, I felt the guilt of being the long-distance caregiver assuaged. We tried to help her celebrate the day, tried to let her know we love her and miss her, wished we could be there.

But it wasn’t enough. The echoes of her voice followed me up the stairs as I hurried to my bedroom to cry.

I hate Alzheimer’s.

©2016 RJ Thesman – Author of the Reverend G books http://amzn.to/1rXlCyhwedding - rj, ct, mom