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A musical Mennonite, the sound of silence, and the hokey pokey

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photo © 2010 gerbor, Flickr

photo © 2010 gerbor, Flickr

I have no doubt I inherited my love of music from my Dad. He grew up singing in a quartet with his dad and brothers, trained professionally as an opera singer before switching to a career in ministry, and conducted many choirs over the years. The rest of my family is no less musical – Dad’s twin brother did, in fact, have a long and successful career as an opera singer in Europe. My grandparents, great-grandparents, and great-great-grandparents also sang in quartets, conducted choirs, wrote music, and played instruments. We Mennonites have inherited a rich musical heritage.

So it’s no surprise that, as a kid, I listened to music and loved to sing along. I had many favourites, Raffi and Sesame Street among them. As a teen I sang in choirs at school and church. At home, I spent hours alone in my room with the stereo blasting one Christian rock band or another. And in university, I studied guitar – classical and electric – and listened to folk, celtic, and oldies, like the Rankin Family, Enya, and ABBA.

Then, when I came down with chronic pain, I found that worship music got me through the darkest times. Later on, in an especially painful dating relationship, my tastes switched and singers like Dido and Evanescence kept me company. And all the way through, of course, Dad’s own voice and his musical favourites – the Gaithers, Steve Green, opera, and country music – were a staple in our home.

But when Dad came down with dementia, as I watched him lose bits of himself on a daily basis and I began to grieve those losses, my tastes switched again. To silence. For the first time in my life, I lost interest in music. You see, I couldn’t listen to moving or meaningful lyrics anymore. They stirred up too many emotions for me during a time when I was already overwhelmed by the deep, difficult emotions I slogged through every minute of every day.

Lyrics that were trite, materialistic, and romantic also hit me in all the wrong ways. I couldn’t listen to people obsess over normal, everyday stuff – it reminded me that most of society didn’t understand the heart-wrenching, mind-bending daily grind of a family carrying a loved one along the road of dementia. This type of music declared society’s ultimate values, and its general apathy towards the problems faced by families like mine.

Even instrumental pieces, if they sounded overly melancholy, chaotic, or epic, were too much for me. My brother, who listens to movie and television soundtracks, has learned to skip the ‘sad’ and ‘heavy’ songs if I’m in the room.

There were a few exceptions: Classical and jazz were usually easy to listen to. Also, when I was looking after Dad on a daily basis, we’d often take in free classical concerts in the community. Two of those stand out to me: I lost myself at a fantastic jazz concert put on by a local university music professor. And I found myself thoroughly enchanted by a string quintet’s performance of Peter and the Wolf.

But for the most part, I listened to the sound of silence. (Not the song. Actual silence.) By the time I was expecting my son, I had read numerous articles on the benefits of playing music to babies in utero. I liked the idea of this, and deliberated over the styles and composers to prioritize on the playlist. But I kept forgetting, because I was so used to silence by then.

In spite of my quiet ways, though, today my now-two-year-old son is a music lover, and in that he takes after his Grandpa Friesen and the rest of his music-loving Mennonite family. And while I still don’t listen to music for my own sake, I find myself happiest with the music my little boy introduces into my life.

And you should see him dance the hokey pokey.

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When Duty Becomes a Friend

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Megan Follows as Anne Shirley and Colleen Dewhurst as Marilla Cuthbert in Anne of Green Gables

Megan Follows as Anne Shirley and Colleen Dewhurst as Marilla Cuthbert in Kevin Sullivan’s “Anne of Green Gables”

How sadly things had changed since she had sat there the night after coming home! Then she had been full of hope and joy and the future had looked rosy with promise. Anne felt as if she had lived years since then, but before she went to bed there was a smile on her lips and peace in her heart. She had looked her duty courageously in the face and found it a friend–as duty ever is when we meet it frankly. – L.M. Montgomery, Anne of Green Gables

At this moment in the story, not long after Matthew’s death, Anne decides not to go to college in favour of staying home to take over the work of running Green Gables, thereby also saving Marilla’s eyesight.

That last part of the quote, about finding duty a “friend,” makes perfect sense to me after having made a similar decision to stay home as a caregiver for my Dad a few years ago.

It certainly came at a cost. I was in grad school, and delayed graduation meant taking on a significant amount of added student debt, not to mention losing a year of income at a new job. It also meant my husband and I delaying our plans to have a family, which might not seem like a big deal until you read about the risks of having children in your late 30s.

But one morning when I was with Dad, as I felt the sting of my circumstances, I also felt deeply privileged to be there for him at this vulnerable time in his life, especially after everything he had done for me over the years.

In that moment, and afterwards, I considered my duty a friend. And although I still feel the sting of that sacrifice, I’ve never regretted my decision.

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Dementia in Springtime

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My Dad, on one of our hikes (2009)

My Dad, on one of our hikes (2009)


Loving Dad at every stage

Each of the four stages of Dad’s dementia changed his personality a little, and I find myself missing not just ‘healthy Dad,’ but I also miss each expression of who my Dad was along the road of his illness.

The middle stage brought by far the biggest changes. He lost awareness of his illness and had terrible outbursts of anger almost daily. But he could also be very sweet, loving and self-sacrificing in his own way. He appreciated beauty, loved people and cherished hopes for the future.

Surprisingly, it’s this expression of him I miss terribly. He’s in the hospital now, the disease so advanced that he doesn’t notice the change in seasons. Some days this is too heartbreaking to bear.

Dementia in Springtime

Spring and summer bring vivid memories of my Dad. He was so antsy, he always had to be active.

So every day we went for a long walk, and we’d comment on the blossoms on the trees, and all the flowers we spotted along the way, and the different animals we saw, like a family of ducks or a stray cat. Each discovery filled him with joy.

This was after his first, life-changing seizure, the one that ushered him from mild dementia into the thick of the most chaotic symptoms.

At times it was easy finding distractions for him and other times it was nearly impossible. But I could usually rely on a walk to keep him in a calm, happy mood. Thanks to his stamina, we’d often walk for hours, consuming his nervous energy and relaxing him for a time. He was always delighted by the things we saw and the people we met on our spring and summer walks.

These days I can’t walk outside without grieving that he isn’t by my side. I can still hear his comments about the landscaping we came across and about his dreams for the future. I miss seeing his face light up with joy and his insistence upon petting every dog we passed and telling every young child how cute they were.

Springtime at the Hospital

I see him in the hospital now, where he’s been for a year. He can’t talk anymore and barely makes eye contact. He’s too weak to spend more than a few minutes standing up from his wheelchair.

Whether he recognizes me is doubtful. And my heart aches that I can’t talk to him like I used to and that he can’t dream about the future anymore.

He took his last spring walk in 2010, when he was too sick to walk faster than a shuffle, with Mom leading him by the arm. It was too challenging to change his shoes, so he walked in his slippers, barely aware of his surroundings.

I spent 2.5 years building a new kind of parent-child relationship with him during that time, and 1.5 years as his full-time caregiver so Mom could work. So while I find myself missing ‘healthy Dad,’ of course, I also miss the Dad I got to know mid-way through the illness.

I suppose when he passes away, I’ll miss my Dad in the advanced stage too. Now, at least, I can still hold his hand and I can tell when he’s happy, hug him, and tell him “I love you” and, when I’m lucky, I might even hear him say, “I love you too.”

I’ve been missing him for eight years now. But I especially miss him in springtime.

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