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Facing my wife's dementia: Should I fly off to see our grandkids without her?

Maria Fabrizio for NPR

I had to make a decision. Would I take my first leisure trip without my wife in ... well, it seems like forever ... to see our grandkids 2,000 miles away?

Marsha and I have been married over 40 years. We have traveled together to so many places around the world and in the U.S., from bigtime tourist draws like Paris and the Grand Canyon to the teeny tiny island of Simi, Greece.

We were a team. We shared blissful moments – I'll never forget those night stars above the canyon's North Rim — and conquered obstacles. When one of us flailed, the other would come to the rescue – like that time I led us in the wrong direction in search of our hotel on a winding road in Positano, Italy, until Marsha wisely suggested an about-face.

Our traveling life entered an unwelcome new stage when Marsha was diagnosed with dementia a few years ago. At first the symptoms were mild and we were able to keep taking trips — mainly to Utah to visit our grandchildren and to California, where our younger daughter moved in 2021.

But dementia did what it always does. It steals a person's abilities, sometimes so slowly you're not aware and sometimes with a startling decline in mere weeks.

When we flew to New York for a funeral last December, Marsha's gait was slow but we negotiated the airport without too much difficulty. By spring it was clear that traveling by air would be incredibly difficult – her pace had slowed, her cognitive abilities had slipped, her spells of agitation, prompted by noise and unfamiliar places, had increased.

Negotiating our home had also become a challenge. It seemed that the time had come to consider a residential facility.

Marsha moved in June – on our anniversary. It was the hardest moment of our married life – harder than living through Marsha's breast cancer treatment, sadder than losing our parents. Because even though I had the support of our medical team and our daughters, I had to make the decision on my own and couldn't ask her to weigh in.

We did what our medical team suggested. My daughters and I dropped her off at the facility we'd picked – a two-story suburban home with eight residents that didn't feel like an institution. We stayed for about an hour, then said we had to run an errand. It seemed heartbreakingly cruel to walk away and leave her with a flimsy excuse. But the staff enveloped her with love, and she didn't protest when we left.

Her adjustment has been pretty good – the staff members are the kindest people you could hope for. But I know that when I visit – which I do nearly every day – her face lights up.

And then, it was nearly fall. Our granddaughter Jolene had a birthday coming up – she'd be turning 6. Wouldn't it be wonderful to be there?

But I couldn't bring myself to make the decision. I knew I couldn't explain to Marsha that I would be going to Utah for four days but will be back. It would be too much to process.

I was so worried: How would Marsha be without my daily visits? What if she became depressed and agitated during my absence? Would she somehow think I'd abandoned her?

Marsha's nurse practitioner and the staff at the house where she lives all told me to go – that I needed to see my grandkids, to live my life. That that's what Marsha would want. Still I felt anxious and guilty. I couldn't bring myself to buy a ticket.

Then on a FaceTime with the grandson, Conrad, age 3, he looked at me with his big blue eyes and said: "Can you come to my house?"

What else could I say but "yes."

So on a Thursday night I spent a couple hours with Marsha after work, as usual. Earlier that week she had been calm and happy when I was with her. Thursday was a little bumpier. She was upset, she kept saying that people were telling her to do things. I had a hard time comforting her.

But when I kissed and hugged her goodbye, she smiled with warmth and love. I used my usual vague departing line: I love you and I have to go do an errand now but I'll be back soon.

At 7:20 a.m. on Friday I was on a plane to Utah.

Conrad and Jolene shrieked with joy when they saw me. We hugged and rolled on the floor, we read books, we went on a drive to a giant slide.

Conrad, asked as we drove, "Where is Nina?" That's how he pronounces Nana, what the grandkids call my wife. His innocent question made me tear up. I told a white lie: She wanted to come but she's not feeling well and couldn't travel. Although in a way that was the real truth.

There were many flashes of sorrow during my visit. When I'd see something that reminded me of earlier trips with Marsha, I was gripped by sadness at the terrible turn in our lives.

I also felt so alone. When you've lived as part of a couple for decades, and suddenly it's just you, and yet your partner is still there ... I felt as if I had lost half of my soul. At Jolene's birthday party, I had lots of people to talk to but I was missing my partner.

Yet there were moments that filled me with joy, that let me conquer my sadness.

One morning before the sun had risen, Jolene tiptoed into my bed with a stack of four books for me to read to her and said, "I love you, Saba." (That's what the grandkids call me – Hebrew for grandpa.) Minutes later Conrad came to cuddle: "Saba, I love you so much."

And when I put them to bed while mom and dad were at a party, I had no choice but to be in that moment.

Jolene picked a book. It wasn't my favorite so I asked if I could pick a different one. "You can't. You're not a child," said Jolene. Then Conrad wanted me to stroke his back and hold his hand while he was falling asleep. Only I put my hand OVER the bed rail to take his hand and was immediately instructed, No, you have to put your hands through the bed rail.

They both drifted off while I made up a story about a unicorn whom I named Matilda.

I knew I had made a good decision to come and be with our dear grandchildren.

How did Marsha do? Both daughters and my wife's sisters called her; they reported that she seemed okay. I felt as if FaceTiming with her myself might bring up worries – where's Marc? Then again, maybe it wouldn't have.

The cruelty of dementia is that there is no reliable road map — you just have to take in all the advice you can from wise souls and then go with your instincts.

After a long weekend in Utah, I got home in the wee hours of Tuesday morning — and went to see Marsha that night. I'd been absent for four days. Marsha gave me a lovely smile and said, "You look so good."

"You look good, too," I said. I gave her a big hug. And wiped away a few tears. "Are you okay?" Marsha asked, holding my hand. For a minute, she was my caregiver as she'd been throughout our life together.

What could I say? I was overwhelmed with emotion, from the joy of the trip, the anxiety of the separation. But yes, I told her honestly, I was okay.

Copyright 2024 NPR. To see more, visit https://www.npr.org.

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Marc Silver
Marc Silver, who edits NPR's global health blog, has been a reporter and editor for the Baltimore Jewish Times, U.S. News & World Report and National Geographic. He is the author of Breast Cancer Husband: How to Help Your Wife (and Yourself) During Diagnosis, Treatment and Beyond and co-author, with his daughter, Maya Silver, of My Parent Has Cancer and It Really Sucks: Real-Life Advice From Real-Life Teens. The NPR story he co-wrote with Rebecca Davis and Viola Kosome -- 'No Sex For Fish' — won a Sigma Delta Chi award for online reporting from the Society of Professional Journalists.