We bought these candles for our farm. Everything we bought for the farm had a story. We had an elegant, cream wrought-iron and marble lamp that had previously graced a funeral parlour; a 19th century, hand-made kid's bed with ropes to support a mattress instead of a box spring—we bought it on Craigslist and the owner's father had slept on it as a child; an inverted tulip lamp from the set of the movie Kit Kitteredge: An American Girl (a local antique store was run by a prop designer); and a knotted harvest table with built-in drawers from an auction where I ate the most exquisite piece of homemade carrot cake. None of these things was expensive. But they each involved an outing, an adventure, and a story.
We sold the farm—furnished—in 2010 when Ben was struggling through months of rehab. Only D'Arcy got to say farewell, bringing back one van-load of items that included the lamps and candles, some pictures and mirrors, dishware and cutlery.
Last week we picked them up from storage and suddenly there are farm memories in our midst.
Ever played Scrabble by candelight? You must try it. It's wicked.
Anything is made special with candles: meals, even homework or curling up with a book.
At the farm we had more time to enjoy the beauty of simple things like lit candles and giant pine cones and country flowers we used to adorn the table.
Now I'm lighting these candles every night as part of something I'm calling my Loving-kindness project.
That's a radical description for one of the most dreaded illnesses of our time. And from a neuroscientist? Dr. Tiffany Chow, a behavioural neurologist and senior scientist who runs the Ross Memory Clinic at Baycrest here in Toronto, wrote the book.
And yet her comment resonated with me, a parent of a child with disabilities.
We find great meaning and joy in raising our children—yet outsiders devalue them and consider our family situation tragic.
I bought the book.
The Memory Clinic is a practical guide for families of patients and caregivers—from how to stall the onset or progression of dementia through diet, exercise and brain plasticity, to how to support spouses or adult children caring for family members who are losing abilities or have unusual behaviour.
What I didn't expect to find was a description of how the Buddhist practice of loving kindness is key to caring for people with dementia—whether you're a family memberor professional.
"Loving kindness is the practice of helping others to feel safe, loved, healthy, and at ease," Dr. Chow writes.
For patients with moderate to severe dementia, Dr. Chow recommends caregivers work with their loved one on this simple list of daily goals To feel safe To feel pain-free To participate in a meaningful activity To feel loved
She notes that these goals are an application of the Four Intentions of Buddhism, which she addresses before discussing more traditional drug or behavioural treatments.
In a description that reminded me of how parents like me can get tied up in 24/7 'fix-it' therapy with our kids, Dr. Chow writes: "I will frequently prescribe time for the caregiver to let go of the nagging, quizzing, coaching role, in order to achieve a sense of calm stillness with a loved one. I can't imagine how awful it would be to see dismay over my every failure on the face of a companion."
I've often wondered in retrospect how it felt to be my son Ben, urged and cajoled to speak by me, therapists, school teachers and assistants, friends and family, when he simply didn't have the mechanical ability. For years!
How would it feel to always be put in a position where you can't be successful? To have the focus put on what you aren't, instead of what you are—when what you are is a rich world waiting to be seen and accepted?
Last night I sat beside Ben on the couch. He was watching Jessie in Toy Story recount her sorrowful story of being abandoned by a child who grows up.
"Is this the sad part?" I asked? He nodded. Then he leaned in close so I could feel his body. I just sat there, enjoying the warmth. At the end of the day, is there anything more important in life?
Another gem offered by Dr. Chow: "To experience joy and love does not require perfect cognitive function." (Or any other ability or physical characteristic, I would add!)
Much of The Memory Clinic is about helping caregivers look after themselves. "Extending loving kindness toward oneself is one of the most vital survival tips I can pass on...," Dr. Chow says. "It trumps teaching... how to pronounce the generic names of medications."
She notes how caregivers are exceedingly hard on themselves (bingo—doesn't this ring true for parents of kids with disabilities?)
She stresses that respite and self-care (including exercise, healthy eating, strong social ties and interests) are essential in allowing caregivers to ride the ever-changing journey they're on.
I've been feeding my worry recently with overeating of homemade cakes with butter icing, chocolate-covered almonds and the like. A few weeks ago while riding the hospital elevator a woman asked me: "Are you pregnant?" This sent up a red flag.
Dr. Chow recommends a Mediterranean diet as a way of reducing the risk of Alzheimer's, so I went and bought a cookbook of Greek recipes—many of which are for fish.
Last night I made a roasted fish dish with cherry tomatoes, red onions and white wine.
I thought it was very tasty.
"Please don't include me as a candidate for further explorations in this area," said D'Arcy, after taking a couple of bites.
The front door slammed.
"Mom, I HATE fish! Why did you make fish?"
"Just try a tiny piece. It's different, you might like it. And it's good for you."
Stomp, stomp, stomp. Backpack hitting the floor. Pot banging on the stove. Frozen cheese tortellinis—ping ping ping—being dropped in the pot.
Ben, however, was quite enthusiastic and finished his plate by signing "good" with great relish.
In addition to the new cuisine, I've gone to the club two days in a row now and resisted my daughter's baking. Bought a pack of cards for more letter writing. And have my eye on a play.
Last night I surprised myself by saying: "Today was a really good day."
And as I bobbed around the kitchen this morning, laughing at things on CBC Metro Morning that seemed oddly funny (but only to me!), D'Arcy turned and said: "I know you're trying to be happy. But it's a little annoying."
I think parents of children with disabilities have a lot to learn from families caring for people with dementia and vice versa. As Donna Thomson, author of The Four Walls of My Freedom often says, we need to speak as one powerful caregiving voice.