Mom’s big red brick house on the hill was like a Christmas card in winter.
In 2010 we spent lots of time in the living room by the fire and the tree, which together created as beautiful a country Christmas scene as might be imagined. I built a snow woman, as I did every year when the weather cooperated. This time I piled too much hair too high on her head, and she was soon decapitated by above-freezing temperatures. She couldn’t be repaired, so I transformed her body into a heart that stood steadfast just outside the window long after I returned to Dubai. The birds sometimes perched there before going to the feeder, Mom told me when I called from the other side of the world.
Elegant snowwoman December 23, 2010
Who needs a head, when you’ve got a heart? December 26, 2010.
Sometime between Christmas and New Year’s Eve we joined friends for dinner and then dancing – in their kitchen. Mom, as always, was the life of the party.
“Blond and red-haired chicks,” the country singer sang.
“Red haired chicks – that’s me,” Mom said to our friend John.
“You were a redhead?” John replied.
“Oh yeah, I was a redhead,” Mom quipped. “One of the wild ones.”
“I should have known,” John said. Then he grabbed her hands and they started to dance.
I hope you’re singing and dancing Mom, wherever you are.
In 2009, I bought myself some snowshoes, and explored the winter field in the back of Mom’s big red brick house on the hill. I created a snowwoman at the front door, and Mom and I got hand-painted mugs for Christmas. We loved those mugs; Mom used hers to share tea with Pia Roma a few days later.
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We celebrated the New Year in real Canadian style by barbecuing salmon on the back deck. We rocked. So did the salmon, it was all good. Or at least that’s how it seemed at the time.
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That year, as we had on several previous Christmases, Mom and I attended the nativity celebration in a neighbour’s barn. The live pageant was complete with sheep and donkeys. That same year we created a Christmas Eve video of our winter adventures including walking in the winter wonderland around Mom’s big red brick house on the hill, decorating the tree, sitting by the fire, and doing lots of blowing kisses underneath the mistletoe.
I love love love this video set to the music of Celine Dion; I took all the pics in and around Mom’s place with the exception of the last one of Mom and I (which was taken by our friend Judy) in the barn after the nativity celebration:
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December 2016: This Christmas will be difficult for me – the first one without Mom since spending special times together from 2005 to 2015, and so many more growing up and in young adulthood. I’m grateful to have this and other video recordings that clearly show that love, music, connection and compassion enable people who live with dementia to engage life well into the later stages of the disease. If you celebrate at this time of year, I invite you to see the hearts and souls beyond the disease and to support people who live with dementia by including them without reservation in the circle of your life.
Flashback December 2014: Christmas is around the corner and Mom, Eric and I are singing Yuletide tunes as part of our weekly healing music session. Here’s “Gloria” as a way to kick off the festive season:
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On September 20, 2009, Mom and squeezed together in the steel blue armchair in the southeast corner of the living room of her big red brick house on the hill. Mom’s cat Pia Roma sat on her lap with a pink ribbon tied around her neck. Mom stroked Pia’s velvet fur as we sat filming a message to mark the International Day of Peace. Pia wasn’t feeling very peaceful because of the ribbon.
I had taken Mom to the geriatrician two years earlier when her memory problems and cognitive issues became evident to me. During the filming of our peace message, Mom forgot Pia’s name. None of these things interfered with our ability to experience joy and laughter in the moment. Alzheimer’s disease did not define Patty then, nor did it define her over the seven years that ensued, or even on August 17, 2016, the day she died.
Today, September 21, 2016, besides being the International Day of Peace, is also World Alzheimer’s Day. I like the synchronicity of that. I believe we need to make peace with this disease. Not that we should stop looking for a cure; of course research should continue and hopefully one day a cure will be found. But between now and then, we need to find ways to live more peacefully with this disease and the people who have it. We need to find joy, laughter, and healing amidst the challenges and tragedy, we need to learn to care better while we search for a cure. We need to find ways to be grateful, not hateful, and to integrated people who live with dementia into our lives and communities.
I am grateful to have shared many amazing moments with my mom as she lived with Alzheimer’s disease, moments like delivering our 2009 Peace Day message in the video below. And, unbelievable as it may seem, I’m grateful to Alzheimer’s disease for the fact that I was dragged (kicking and screaming) into the role of care partner and in that role found healing as well as love and purpose.
I hope you will join me in reflecting on the meaning of peace and healing on this 2016 International Day of Peace and World Alzheimer’s Day.
We all die in one way or another. Too many in war. Too many in childbirth (still!). Too many too young. But we all die eventually. And we all leave loved ones behind. They key is to keep living until the end, and not to die before we’re dead.
There is beauty in remembering those who have left this place for another, and solace in shared grief. This video speaks to both. I would like to dedicate the video and this post to Heidi Sloss’ mom, who, though she probably didn’t know it, is part of the fabric of this blog. Heidi supported me from the moment she found me, which was early on in the days of MyAlzheimersStory.com. Her comments helped me to keep going. Knowing I played a part in Heidi’s and her mom’s Alzheimer’s journey means a lot to me.
Thanks to your mom Heidi, for bringing you to me ❤
I love this beautiful quote by Dame Cicely Saunders, founder of the hospice movement. It captures what I wish for my care partner, myself and for all us: to live until we die, and to die in peace when the time comes.
Here are seven ways to honour those living and dying with dementia:
1) know with certainty that they there, always, until the very end and beyond. It may be more difficult to see past the external manifestations of the disease, but it’s even more critically important to let them shine.
2) respect their rights, especially the right to express themselves in whatever way they can – an angry word, a piece of resistance or a single breath may embody the experiences or wisdom of a lifetime.
3) listen carefully using all your senses, including your sixth sense, to connect with their soul and their spirit; let your broken heart be an open heart.
4) love them for who they are now, don’t waste a moment wishing they were somebody they were once upon another time.
5) celebrate their life while they’re still living, even as you grieve their imminent departure. Remember there will be plenty of time for mourning when they’re gone.
6) smile readily, laugh lightly, sing sweetly, touch gently, experience freely, hold tenderly, love boundlessly, and perhaps most important, let go gracefully.
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On February 27, 2015, I lost a friend. A couple of weeks later, I went to his funeral.
Sometimes friendships take years to develop. Other times they are forged in minutes. This one was somewhere in between.
At the funeral service I reminisced with my new friend’s daughters, who had also become friends, about how touched I was when he would compliment me and others. He liked coffee. We drank tea. We ate cookies. He preferred none. We shared space, conversation, music, and fragments of life with him and his wife and family.
We talked about the weather and incidentals that didn’t matter at the time, but in the end somehow mattered a great deal. He rarely sang. On one occasion he joined in a rendition of Amazing Grace. His wife often shared stories of their life together. We loved the one about their place in Montreal with the woman who may have been of “ill repute.”
“You lived in a brothel?” I teased, and we all laughed.
We admired the matching boutonniere and corsage he and his wife wore on their 68th wedding anniversary. Sixty-eight years of marriage. That’s something.Then he became gravely ill. I didn’t know his nickname or that he liked to laminate things. I found out at his funeral. I can’t imagine how devastated I will feel when Mom leaves, and my heart goes out to our newfound friends on the loss of their beloved husband and father.
After the funeral, I told them about a poem that made me feel hopeful about death and dying:
The Sailing Ship
What is dying? I am standing on the seashore. A ship sails to the morning breeze and starts for the ocean. She is an object and I stand watching her Till at last she fades from the horizon, And someone at my side says, “She is gone!” Gone where? Gone from my sight, that is all; She is just as large in the masts, hull and spars as she was when I saw her, And just as able to bear her load of living freight to its destination. The diminished size and total loss of sight is in me, not in her; And just at the moment when someone at my side says, “She is gone”, There are others who are watching her coming, And other voices take up a glad shout, “There she comes” – and that is dying.
Bishop Charles Henry Brent (1862-1929)
When I reread it, I realized how it might also apply to people with dementia.
This line in particular struck me:
“The diminished size and total loss of sight is in me, not in her…”
I feel more strongly than ever that people with dementia are here with us, and that the loss lies not in them, but in our inability to fully see them.
There is hope in the journey and the possibility of renewed life in distant places.
“That’s the best idea yet!” I congratulated my cousin Liane.
“I KNOW!” She answered with a smile I could hear. “Who can resist laughing babies?”
“Not even me,” I LOL-ed.
Fifty-year-old Liane, a former nurse, care partners with her 80-year-old friend Florence who was recently diagnosed with dementia. Liane helped Florence move into an assisted living facility across from a long-term care home where the pair now volunteer for an hour or two each afternoon.
“Florence loves to be active. And she’s very social. So she and I were serving tea – having tea is one of the highlights of the day, you know.”
“I know,” I said. “There’s not much to do in those places. Everyone’s bored to tears.”
“Yeah,” she agreed. “Anyway, I had just given a cup of tea to one particular lady who always seems to be unhappy. She’s kind of grouchy and mean. Never smiles. Always complains.”
I’d probably be unhappy too, I reflected to myself. We need to do a better job of caring for the elderly, especially those with dementia. They deserve better than what they’re getting.
“All of all of a sudden I got this brain wave,” Liane continued. “I fished my iPad out of my bag, got on to YouTube, and found a video of laughing babies. Well. You can’t imagine the reaction of that cranky old lady. Within seconds she was smiling and laughing and pointing at the babies. It was great.”
“That’s BRILLIANT Liane. I wish I’d thought of it.”
“The next day, I put laughing babies on the big screen they have in the common room. All the ladies and even the few men that were there were over the moon. ‘Isn’t she cute?’ One said. ‘Look at that one,’ another said. They were smiling and cooing and oohing and ahhhing. Laughing babies. Best cure ever. Who knew?”
Better than any pill ever invented for immediate relief of boredom, depression, anger, anxiety, aggression, aches, pains, and overall malaise associated with life, aging, dementia, and most everything that might ail you or your loved ones.
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On an August night in 2015, as I ate supper on the porch of the house I rented at the time, I glimpsed a white line above the sunset horizon. A tsunami of emotion swept through me and I began to cry. It was one of those chest-heaving, choking kinds of cries, the ones accompanied by lots of fat rolling tears.
I was reminded of the many summer evenings Mom and I had sat on the deck at the back of her big red brick house on the hill eating salad made with greens fresh from her garden. A steady stream of night flights to Europe invariably flew overhead as we dined. She always remarked on the planes, and when the dementia began to take hold each one of the dozen or so that crossed the twilight sky became the one to London, the one I would take when I left to go back to Dubai.
In the years before my 2011 return to Canada, I spoke with Mom almost daily on the phone. At the end of every call she would ask me when I was coming “home.”If my visit was imminent, she would be ecstatic: “I can’t wait to see you!” Otherwise she would rue: “Oh. Not before then? I’d hoped it would be sooner…”
When I saw the stream of vapour on that August night in 2015, I was flooded with sadness for all the times she must have looked to the sky when I wasn’t there, thought of me and prayed for my safe return. I imagined all the times, as the dementia progressed, that she was terrified to be alone in the big house by herself.
Eventually she got her wish, but not in the way she would have wanted or expected. After the tears abated, I wrote this poem:
night flights to london
by punkie
tonight as i ate
shrimp salad on rye
i noticed the streak
of a jet in the sky
i choked on a thought
and started to cry:
“life! leave me alone,
let sleeping dogs lie.”
i remembered the days
when we supped in the back
with the sun sinking low
until all had turned black
we drank and we laughed
and we had a good crack
“look punkie,” you’d say
as you gave me some flack:
“there’s the night flight
to london up in the sky
i wonder who’s on it
for what, whom and why?
i wish we could go there,
do you think we might try
to travel afar one day
you and i?”
“that would be fun mom”
i agreed in reply
while i sipped on fine wine
with a tear in my eye
“we’ll go in september,”
i told a white lie,
“your birthday is then
and a ticket i’ll buy.”
a moment passed close
then a lifetime, then two
as we sat in the dusk
with the deer and the dew
we pretended in silence
our dreams might come true
how else could we manage
to make our way through?
“look punk, it’s there!
look up in the sky —
the night flight to london
that goes on to dubai
i can’t help but miss you
when i see it on high,
why can’t you just stay
right here by my side?”
god granted your wish
though not how you thought
dementia delivered it
then left us to rot
but we turned the tables
and twisted the plot
to find healing and joy
in the battles we fought
now it’s just me
with chablis and blue sky
my appetite lost for
shrimp salad on rye
i weep at white tails
of night flights that fly
all headed for london
then on to dubai
My Alzheimer's Story 