A Dementia Disaster

“To care for those who once cared for us is one of the highest honors.” ― Tia Walker

“To put it simply–our brain span should match our lifespan.” ― Meryl Comer

So handsome in his Lockland High School picture!

Stuck between my feuding daughters in the hot back seat, I turned to look out the rear window.  There Grandpa Gil stood, car keys in hand, frozen like a statue.

“Sweet Jesus.  Just go open the trunk and get the thermos yourself,” I hissed to my husband Rick.

“Calm down.  He’ll remember in a minute.”  This after waiting for Grandpa to remember for the last five minutes in the Cracker Barrel parking lot.

“You mean he’ll remember where he is?  Or he’ll remember that we’re in his car?  You really think he’ll remember how to unlock the trunk and to get the thermos and to get back in the car?  Seriously?”  Rick’s patience was trying my patience.

Grandpa was still standing there in front of the trunk, looking at the keys in his hands.  I clicked open my seat belt as loudly as I could and climbed over paper dolls and Pretty Ponies to reach the door handle.  Before I could get out, Rick lowered the driver’s side window, and stuck out his head.

“Thanks for getting the thermos, Gil,” Rick purred.

As if Rick had pushed the “on” button, Grandpa came to life.  He clutzed around with the key and finally managed to open the trunk.  Now, settled back in my seat with my seatbelt relatched, I turned and looked back through the rear window. All I could see was the open trunk door. Waiting, waiting. . .

Finally, I heard the trunk slam shut, and Grandpa made his way to the passenger side of the car.  And then he stood, staring at his keys.  Rick pushed the lever to lower the passenger side window and called out a cue: “Last leg to Gatlinburg, Gil.  Ready to go?”  Grandpa finally opened the door and got in the car.

Rick thought Grandpa should get to carry the keys for his Buick Electra which he was no longer capable of driving.  He thought it would make Grandpa feel useful if he had the job of unlocking the doors and trunk. “Give him some dignity.” Four hours ago I had agreed.  Four hours ago, before two rest stops and a lunch break required six such key ordeals.

To the right of the teepee, you can just barely see the edge of the cage where a real bear cub was.

Fifty-some years ago, Grandpa Gil and Grandma Mootsie made this trip together for the first time.  This was back in the day when the trip took two days, with breakfast in Berea and an overnight stop in Corbin, Kentucky.  This was back in the day when there were just a few motor lodges in Gatlinburg.   Grandma and Grandpa became Gatlinburg evangelists, and they returned twice a year throughout their marriage.  They tried to reel in my parents’ generation, then mine, to make us Smokies fanatics, too.  There is a picture of my parents, still newlyweds, on top of Mt. LeConte where they hiked with my grandparents.  There are pictures of me and my brother Steve posed with a real Indian who was decked out in inauthentic bright feathers and bones and war paint.  A bear cub in a cage, poor thing, is in the background.  In the end, though, it was only Grandma and Grandpa who felt the irresistible pull of the Smokies.

Mootsie and Grandpa on their wedding day

When Mootsie passed away in 1980, so did these habitual treks to the mountains. As the steamy summer became musky, orange autumn, Grandpa became melancholy, missing his beloved mountains.  As spring bloomed forth, Grandpa wistfully recalled fragrant rhododendron dotting Tennessee hillsides.  When we realized that Grandpa was grieving not just the loss of his wife, but also his visits to the Smokies, we decided we’d make the trip at least once a year with Grandpa and our kids in tow.

By 1987, though, Grandpa’s dementia had progressed to the point that I questioned whether we should try it one more time.  Rick insisted we should go.  He said it would be fine.  If I could watch the girls, he said, he’d watch Grandpa Gil.

“Why, look there,” Grandpa said, as we rolled into Gatlinburg.  “They tore down the Mountain Manor.  Imagine!  That parking lot there used to be the Bearskin Motel, remember, Sandy? They had a real bearskin rug with claws and teeth. Liked to scare you to death.  Oh, look.  That little shop where I brought the girls’ blue dresses is still there.   Now, Rick, you’re going to turn down Airport Road at the third light” Gatlinburg was working its old magic on Grandpa. Maybe it would be fine.

The Alto Motel–which is now a parking lot

Grandpa guided us to The Alto Motel, a wood and creek stone two-floor motor lodge he loved.  We parked in front of our adjacent units.  Grandpa struggled to open the car door and get out. He walked to the back of the car.  And stood there.

“Thanks for opening the trunk, Gil,” Rick called out of his open window.  And, finally, Grandpa did.

I grabbed the room keys and opened the doors of our adjoining rooms.   The kids rushed into our room, fought over the ice bucket, then ran down to the ice machine.  Grandpa followed me into his room.  I put his suitcase on the luggage rack, then headed into our room through the adjoining door.  When I turned around to close it, I saw Grandpa standing in the middle of his room.

“What’s wrong, Grandpa?”

“Why, I can’t find the bathroom.  Does this room have a bathroom?”

Grandpa could direct us to hiking trails and restaurants, but he couldn’t find the bathroom in his motel room.  He was a hologram, different from every angle.

This “old-tyme” picture was taken the day before Grandpa Gil disappeared.

Even now, after everything that happened, I can say it was a really great Memorial Day weekend.   Maybe this last trip was even the best one we ever took with Grandpa.  He held the girls’ hands as we hiked the Sugarlands Nature Trail.  We had an “Old Tyme” picture taken.  Grandpa agreed to wear a costume if he didn’t have to remove his “britches.”  He insisted on buying the girls stuffed bears. Grandpa watched the girls ice skate at Ober Gatlinburg and reminisced about skating on the Mill Creek, from Lockland to downtown Cincinnati, when he was a teenager.

He chuckled.  “Why, I have half a mind to go down and try to skate. You know, I think I could.”  Fortunately, he quickly forgot this notion.

He was attentive to the girls, kissing them, patting their heads, chucking them under their

Mootsie and Grandpa Gil at the wedding of my parents

chins.

He laughed when they played a silly hand clapping game.  He marveled when they made the most ordinary observations.  He cheered them on when they pumped their legs on the swing set by the motel.   He worried that their clothes were too flimsy and their shoelaces weren’t tied.

Mootsie and Grandpa Gil signing the guest book at my wedding

Each night he insisted on treating us to a sit-down meal in a nice restaurant.   He always dressed for the occasion.  He came out of his motel room wearing a dress shirt and a gravy-stained clip-on tie. You could see the tracks of his fine-toothed comb in his silver hair, which he had slicked back with brylcreem.  When we arrived at the restaurant, he pulled out my chair.

It was an ordeal to entertain a five and a six-year-old for a formal meal, but while I pulled paper and crayons from my purse, Rick read the menu to Grandpa.  Rick kept up his end of the deal; as I cut the girls’ meat, Rick cut Gil’s.  Grandpa insisted on paying the bill, and Rick helped him count out the money.  Then we went to the car and, eventually, Grandpa unlocked it.

On the last night of our trip, we tucked Grandpa into bed in his adjoining room.  First we had to argue with him about our hour of departure the following morning.  Remembering the long journey on the Blue Ridge Parkway of years past, not the straight five-hour shot up I-75 we currently faced, he predicted dire consequences should we depart after dawn.

“Why, the weather could turn, and there you’d be in the mountains!”

“Grandpa, it’s May.”

“Why, the conditions are so different in the mountains.  You just don’t know.  Why, I read about a couple who –”

“We’ll be home in five hours flat.  I promise.”

The argument would have ended quickly had I consented to his 5:00 A.M. departure plan, but as a mother of a five and a six-year-old, such a goal was unrealistic, unthinkable actually.  As he became increasingly testy, I just knew we couldn’t win this battle fair and square, so we relied on an underhanded, yet effective, strategy:  shut up, wait a few minutes, and he’d forget.

When we heard Grandpa’s rattling snore, Rick and I exchanged a congratulatory “We did it” kiss, then fell into a deep sleep.  Soon after, we heard banging on the door that connected our room with Grandpa’s.  I stumbled out of bed with remembered coordination from my early motherhood and slumped on the adjoining door, opening it.  There Grandpa stood, as if a monument, fully dressed.  His London Fog jacket zipped to his chin, his khaki hat pulled down to his ears.

“Time to go,” he announced.

“No, Grandpa.  It’s 2:00 in the morning.”  I lifted his limp arm and looked at his wrist.  He was wearing his watch upside down, so it appeared to be 7:30.  “See, Grandpa, you just have this on upside down.  Now go to sleep.  I’ll wake you when it’s time to get up.”

I took off his hat, unzipped his jacket, sat him on the end of the bed.  A sliver of black caught my eye.  His door was ajar, and night crept into Grandpa’s imagined morning.  I shut and locked the door, wondering briefly why it had been opened.  I turned one last time to see Grandpa, statue-like, still perched on the end of the bed.  I unfolded him, as one does to a Ken doll to get it to lie flat.  I went back to our room and, as before, fell into a deep sleep that was to be repeatedly interrupted.

How many times that night did Grandpa pound on the door?  Were my commands to “Go back to bed” real or dreamt?  My fatigued body could not peel the layers of sleep and wake apart, and even now I am not sure how many chances I had that night to avert the disaster.  To Be Continued 

CLICK HERE TO PROCEED TO PART II

“Alzheimer’s, Parkinson’s, brain and spinal cord disorders, diabetes, cancer, at least 58 diseases could potentially be cured through stem cell research, diseases that touch every family in America and in the world.” ~  Rosa DeLauro

If you are a caregiver for someone with dementia, you may find these links helpful:

Find You in the Sun:  A wonderful blog by a woman caring for her mother who has Alzheimer’s. 

http://www.alz.org/care/alzheimers-dementia-safety.asp

http://www.alzheimersreadingroom.com/  This site was recommended to me by my dear friend, Kathleen Ernst, who lost her mother and sister to Alzheimer’s.  She was a wonderful, loving caregiver to both.

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