‘Peaks and valleys,’ he said.

We were an instant couple, Peter and I, when we met forty-some years ago. At the time, I was a struggling single mom with two young daughters to raise. “Peaks and valleys,” Peter would counsel when I fretted, “life is all peaks and valleys.”

I’ve thought about his mantra recently and wondered, would he even understand the meaning of the words now. As his dementia worsens the valleys are deeper and wider, the peaks, fewer.

A week ago, we teetered on the edge of an abyss.


The day started beautifully, definitely a “peak.” Soft warm breezes encouraged me to garden and Leslie came for lunch and cards. Perfect. Peter used her visit as an excuse to take his lunch to the basement where he’d watch t.v. Two hours later, when I yelled to tell him tea was ready, the silence below screamed. The basement was dark.

I dashed upstairs calling his name. Gone.

Gone!

He’d sneaked out while Leslie and I sat just outside. I use “sneaked” advisedly because he’s done it a few times. He has a “stealth” mode that allows him to slip away. Nobby, usually at his side, wasn’t with him because for the previous four days he hadn’t walked at all. His woeful puppy eyes told us his old arthritic knees ached.

Leslie took charge immediately, while I, heart-hammering and generally useless, attempted to follow her orders. She called the police, family, friends, told me to send photos of Peter to her, posted Facebook messages. With three photos on her phone, she sped off to nearby businesses — grocery, restaurants, bakery, wine shop, hairdresser. I stayed home to answer phone calls and texts, to be there in case he came back on his own. I called friends to be on the lookout and soon, unbidden, Peter’s carers, Karen, Bill and Mark, showed up to offer help and support.


The power of Facebook startled me, a hesitant user. Re-posts popped up quickly. Granddaughter Samantha, who lives in Washington, DC, has a friend with a niece who’s interning with our local EMT squad. Some four hours after I discovered he was gone, the young woman, thanks to her aunt’s post, spotted Peter on the steps of a church on the northern edge of town.

Meanwhile, son-in-law Martin, directed by Sam 267 miles away, went to collect Peter. Sam was still on the phone with her dad when Peter got into his car. “Want to talk to him?” Martin asked Sam.

She said yes, even knowing her Dad-Dad hates phones. “How you doin’, Dad-Dad?”

He chuckled. “Well, Luv, I thought I was going to get away,” he said, “but they caught me.” Hours walking in the hot sun, no hat, badly sunburned, no water,  tired and confused, he was still ready with a joke. Just after seven Martin brought him home. “I’m in trouble, aren’t I?” he said.

He hugged me so tightly I feared for my ribs. “No, not in trouble, but Steps. Will. Be. Taken,” I said, raising my left eyebrow to high-threat-warning level. He shook his head and gazed at the roomful of people without seeing them.

“Why did I do that, where did I go,” he asked over and over.

“If you don’t know why, then no one does,” I said, “and where you were is a mystery to all of us.”

Steps have been taken. Leslie installed door alarms that screech when the doors are opened and I’ve chosen a bracelet-style gps that will help me keep track of him. He’ll hate it.

In the meantime, we walk Nobby together. Peter doesn’t like it because he wants to be out in the neighborhood on his own with his dog. I don’t like it either because the half hour they walked was thirty minutes to myself, to read, write, or do nothing at all.

In that one afternoon, our lives changed more dramatically than the day, years ago, when the doctor diagnosed “early dementia.”

From now on the peaks will be ever smaller, the valleys, broader and more difficult to traverse.

Header photo: Victoria Falls, Zambia, September, 2005.
Bottom photo: Alaska Range, Mt. KcKinley in the distance, 2006.

2016 National Society of Newspaper Columnists’ contest finalist. screen-shot-2016-12-07-at-10-14-53-am

Down the down staircase.

The downward path that any of the dementias take follows various routes, with stops and starts along the way. There are plateaus when it seems the diagnosis is a bad dream, when everything seems all right again. Normal.

Until the next minute or hour or day when the nightmare resumes.

Even though I often say — and truly believe — that my husband isn’t as bad off as most, that my caregiving tasks are easy compared to some, truth is, it’s a roller coaster ride that is not for sissies.

We’d been coasting along with mild ups and downs, a kiddie roller coaster, until one day three weeks ago. Peter and Nobby returned from a weekly nursing home outing with ever-faithful Bill. My husband came back so distressed and overwrought that it was as if had morphed into another person entirely. His mild-mannered self was gone, and in its place was a man I didn’t recognize. His face was different, his eyes were wild, his whole demeanor changed.

“That’s it. We’ll never go back there. Can’t go anymore,” he yelled as he paced. “They won’t let Nobby in any more.”

My worst fear came to mind. “Did Nobby knock someone down?” I asked. He’s a big dog, but as affable and lovable as a puppy. I envisioned him jumping on a frail old lady causing her to fall and break her hip.

“No, no, but they won’t want us anymore!” I continued questioning, but he couldn’t explain.

I contacted Bill to ask what had happened. He said Peter seemed “off,” very quiet, and he hadn’t wanted to go to their usual lunch. Nobby had been his usual friendly self,  no one was harmed, the visit had gone as well as it always does. Bill chuckled when I told him Peter thought he had gone to visit his mother. (Bill’s mother passed away twenty-some years ago.)

That day was a turning a point, a sharp turn in the steep, down staircase. I had hoped he’d magically snap back to the way he was, to the holding pattern he’d been in, but he hasn’t. This, then, is his new normal.

 

Nobby always watches Peter.

 

2016 National Society of Newspaper Columnists’ contest finalist.screen-shot-2016-12-07-at-10-14-53-am

Trouble with a capital T rhymes with me!

My friend Bette made it a point to tell me she’d seen Peter at the grocery store recently. She figured I must be in the store somewhere, although she didn’t see me. Bette introduced herself to him because she knew he wouldn’t remember her name. His response was quick and so typical of him. “Don’t tell ‘anyone’ I’m here. I’ll be in trouble.”

Anyone meant me, of course.

She didn’t remember what day it was, but I figured it was probably the Tuesday he snuck out without telling me he was leaving, nor where he was going. When I realized he wasn’t here and that he had probably been gone well over an hour, I went looking. By the time I got home, he was back. “Where’ve you been?” he asked, greeting me at the door as if he’d been out looking for me.

“You didn’t tell you were going out,” I said. “I’ve been looking for you.”

“I didn’t know where I was going,” he said. “I just went for a walk.”

“Where?”

DSC01592He shook his head. “Can’t remember.…that was a long time ago.” He uses the “long time ago” line a lot in attempt to joke his way out of Trouble. His only Trouble would’ve been if he had gotten lost for real!

That evening I found a Hershey bar wrapper and deduced that he’d gone to Kroger’s.

Several days later someone else told me she’d seen Peter at Kroger’s and he seemed confused. She saw him leave and decided to call me — it was that same Tuesday. I didn’t see her voice mail until after he’d “found himself,” but it is comforting to know we have friends to help me keep track.

Screen Shot 2016-06-15 at 11.56.06 AMI am researching personal tracking devices. There are several types on the market, but he wouldn’t use any of them willingly, and I know he would find ways to “lose” them. He’s crafty that way.  I wish someone would come up with a microchip like veterinarians implant in dogs. The idea would make Peter laugh…I think that will be my little secret.

screen-shot-2016-10-26-at-10-14-07-am

Breadcrumbs?

 

The National Society of Newspaper Columnists contest winner, 2016 —
online, blog, & monthly under 100,000 unique visitors category.

On canyon’s edge!

Three years ago I published my first post, “We’ve arrived, and to prove it we’re here,” on my new blog, “Wherever you go, there you are.”  A year later, August 6, 2014, I published my first post for this, my second blog.

I often think about how the subject matter of this blog has affected what I intended to write about in “Wherever you go, there you are.” As my husband’s dementia has worsened, traveling anywhere, even to the mall, can be a problem. His wardrobe needs to be replenished but he won’t go willingly to look for new shirts,pants, or shoes. If I try to buy things and take them to him, he won’t wear them. He didn’t even like the socks I bought.

I knew our last big trip in 2011 was our final trip — Peter got lost, at night, at Bryce Canyon, Utah. He wanted to hear a talk in the main lodge, within sight of our room. It was daylight when he left, and would be daylight when he returned. He went by himself.

Dusk fell. He wasn’t back. I raced to the main lodge, panicked because I’d let him, urged him, to go alone. 

When I got to the desk, terrified and gasping, I could hardly speak. The staff jumped to action. Grounds crew sped out in golf carts, while I stayed behind and paced. It wasn’t long before the desk clerk beckoned. Peter had called! My husband, who never uses a phone, had the presence of mind to go into a dorm, knock on someone’s door and ask to use their phone.

“Stay right there, we’re coming,” I said. I hopped in with a groundskeeper and we rocketed through the dark.

Peter was inside a lighted entryway. He grabbed me and apologized over and over for getting lost. He was shaking. He’d never go off on his own again, he promised. “But it was my fault,” I said. “I should’ve gone with you.”

Neither of us slept well thinking what could have happened. I knew that trip was our last. No way could I cope with the escalating need to keep closer tabs on Peter, and keep track of travel details too. When we got home I tucked our luggage away and made a photo book of our travels to remind us where we’d been.

Now, the smallest outing is an event. We don’t go far, but we have mini-adventures. “Others deal with far worse,” my mother would’ve said, and I know it’s true. Besides, in the end, there’s no place like home.

Header: Queen’s Garden, Bryce Canyon, Utah (2011)

National Society of Newspaper Columnists 2016 contest winner —
online, blog, & monthly under 100,000 unique visitors category.