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My husband may have dementia but we find ways to stay connected and show our love

FIRST PERSON

My husband may have dementia but we find ways to stay connected and show our love

I'm lucky to have discovered that it's impossible to love this deeply and still wonder about life's meaning, Margaret Nelson writes

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My husband and I watch BBC's Planet Earth on his small flat-screen. It's about primates, some of whose names I've never heard. Names such as tarsier, aye-aye and diademed sifaka. David Attenborough wanders the planet, showing where the various apes live, how they survive.

We sit close on my husband's single bed or, when my bent knee aches, stretch out, side-by-side, squeezing in as best we can. I miss this cuddling, this physicality. Following his two major surgeries and the slow onset of his dementia, I can no longer look after him at home. Luckily, this facility is a good one, clean, friendly and close by. His room is warm, but we huddle together regardless.

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Attenborough shows us the aye-aye of Madagascar. "In captivity, several types of olfactory clues were observed, including buccal [cheek] marking in which the aye-aye's cheek is rubbed on an object."

I smile, noting how often I stroke Don's cheek with the back of my hand, especially in the car when hugging won't work.

The camera moves on to the snow monkeys of Honshu, Japan. Don laughs at their antics, a full-on whoop, disproportionate to the occasion, but I don't mind. As long as he's happy. He doesn't hear well, often talking over Attenborough's commentary, but as I listen, I'm impressed with the way these northern-dwelling primates snuggle together in lanky treetops, huddling for warmth during the sub-zero nights.

"Twenty below!" I exclaim, giving Don the short version.

"Wow!" he responds. "Now that's cold!"

They have old-man faces, these snow monkeys, and double-thick fur for insulation. Watching them amidst the falling snow, we feel even cozier in our warm room.

Don seems engrossed throughout the program. His laughter is my tonic, but I know he's a skilled pretender, ready to applaud anything he thinks I may like. Chimps can deceive and empathize, too. But what we watch isn't the point anyway. It's what we share. We can still be together, physically and emotionally. We can still laugh; we can still bond.

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Attenborough wanders among the ring-tailed lemurs of Madagascar. They bunch together for warmth, adorable in their white faces and kohl-dark eyes. The commentary says they're female-dominant and active only during the day. They have long snouts and wet noses.

"Like you!" I say, wiping his own beak with a Kleenex. He laughs, unaware that it tends to drip.

He sits on his bed while I gently stroke his back and shoulders, sending out love and receiving it back through his trust. He sips the Starbucks coffee I brought while continuing his delighted comments about the primates on TV. His happiness comforts me. Together 45 years, we've learned to trust in the other's regard.

Of course, there have been difficulties, but in these final years, only the love matters. All else has fallen away, eclipsed by our need to see one another to the end. I can't help but wonder how long we'll have even this limited contact. At the same time, I thank all the stars that I recognize its value.

Attenborough moves on. In a wildlife orphanage in Zambia, chimps have been observed mourning the death of a friend. Don and I watch in silence as the apes sit for 14 minutes with Thomas, the dead chimp, alternately sniffing and touching him. They neglect even fresh food, so caught up are they by grief and the great mystery of death.

We humans also struggle with death, grasping for peace of mind as we age. Sitting here with Don, I realize that, even with our separate living arrangements, we have peace as long as his health holds. He knows he needs 24/7 care and accepts his condition without complaint. I'm able to enjoy his company, hugely grateful he's doing so well here.

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However, like all primates, we are ambulatory, so we venture out in my car five times a week to the Tim Hortons drive-through window. We turn the motor off in the huge outdoor parking lot to enjoy our coffee and apple fritter. A former truck driver, Don visually hunts large vehicles like a macaque in Jaipur stalks a vendor.

"There's a tandem axle!" he announces as if it's a flying saucer. "Check out that rig!" Trucks are what he remembers.

On 2-for-1 Wednesdays, we hit the IHOP for breakfast. For Don, a walker provides a stabilizing extension, but I envision it upside-down, flashing to yesterday's red howler monkey hanging from trees in Guyana, its prehensile tail providing extra grip as it plucks delicacies from lower foliage.

I order Don's waffle for him while he greets every stranger who passes, puzzling them. He's no longer certain who he knows, so he covers all bases.

When done with breakfast, we drive around residential neighbourhoods, ostensibly looking at new houses but really so that he can smoke. He's allowed seven cigarettes a day in the home, but it's never enough.

He comments as we creep down various side streets, "Man, there's a lot of cars here!" His words are meant as a distraction for me while he reaches for another smoke and attempts to pocket the lighter for later.

"You little monkey!" I laugh, retrieving it. It's an apt comparison.

All in all, though, no matter where we drive, both of us look forward to every outing. I have a sense of purpose, of cushioning the losses inherent in his dementia. It's all that matters to me now, and it creates a peace, an unexpected bonus arising out of full commitment. I'm lucky to have discovered that it's impossible to love this deeply and still wonder about life's meaning.

I know it like my own name now… love is why we're here.

Margaret Nelson lives in Vancouver.

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