Care Partnering, Inspiration, Life & Living, Videos

when i get muddled, i sure wish she were here

Everybody gets mixed up, loses things, forgets stuff, sometimes feels confused, and gets lost. It can happen at any age — seven or 70. We all need help, support and looking after sometimes, and boy, you sure realize it when you’re alone.

I wish my mom were still around to look out for me. Or maybe she is, but just from a different place…

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Advocacy, Inspiration

ghost people

old woman on chair


When I heard the CBC interview with Martin Pistorius, I knew I had to read his book Ghost Boy.

Pistorius sank into a vegetative state for four years after being struck by a mysterious disease at the age of twelve. His mind began to emerge from the coma at 16, but his body, with the exception of his eyes, remained paralyzed. No one around him, including his family, knew he was conscious because he was unable to communicate.

This is what it must be like for people with dementia in the later stages, I thought. They are trapped inside their bodies and cannot make themselves understood.

Pistorius’ book is fascinating. It describes what life was like for him as a “ghost boy” until, after years of him being aware but no one knowing he was, one of his caregivers saw glimpses of his potential and arranged for him to be tested; he was 25 years old.

Throughout this time, his father was adamant that Martin should be with his family, so he resided at home and spent his days at a facility for severely disabled children. When his parents traveled, usually once or twice a year, young Pistorius was taken to a “home in the country” where he lived round the clock for several days or weeks while his parents were away.

In a chapter entitled Memories, Pistorius graphically describes the abusive treatment he received in this place:

“Eat it, you f—ing donkey,” the caregiver snaps at me.

I stare at the mince lying gray on the spoon in front of me. I’m 21 years old and still the ghost boy.

“Eat it!”

I open my mouth, and burning hot food is shoveled in. The rancid taste fills my mouth. Bile rises in my throat. I forced myself to swallow.

“And another.”

I open my mouth obediently. I know I must try to think of something else if I’m to persuade my stomach to accept what it is being fed. I look around the room. The jarringly soft strains of classical violins play in the background as I look at the other children here. Some cry; others are silent. My throat burns as I swallow.

“Hurry up, you heap of rubbish. We’ll be here for hours if you don’t speed up.”

The metal spoon crashes against my teeth as she forces another mouthful into me. I wish she would leave me hungry, but I know she won’t.”

Pistorius goes on to say how terrified he became each time he knew he would be taken to this “home in the country:”

“As my heart beat and my throat tightened, I would long to scream and wondered if I could make my parents hear my thoughts if only I tried hard enough.

But the one thing I wished for more than anything else as I sat strapped in a seat, powerless to tell anyone about what I knew would soon happen to me, was for someone to look at me. Surely then they would see what was written on my face? Fear. I knew where I was. I knew where I was going. I had feelings. I wasn’t just a ghost boy. But no one looked.

When my mother or father finally came to pick me up, I listened helplessly as they were told I’d had another good stay.”

Martin Pistorius eventually emerged from his silent hell. He learned to communicate using a computer. He became a web designer, he married, he wrote a book, and he gave a TED talk.

But I cried through the chapter called Memories. I cried for Martin Pistorius’ pain and suffering and for his helplessness.

And I cried for all the vulnerable people in this world, many of them with dementia, many of them elderly, who are trapped like Pistorius was, who are unable to make their voices heard, who have no one to advocate for them, who suffer in silence and who are powerless and often forgotten.

They are our ghost people.

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Inspiration, Life & Living, Love, Videos

they may forget, and we should reach out

Alzheimer’s dementia care partners everywhere despair as their loved ones’ friends and sometimes even their family members seem to disappear, leaving both the person with dementia and their care partner feeling isolated and alone at a time when they need friends and support more than ever.

I know what it’s like; I’ve been there myself. It’s devastating, debilitating and soul-destroying.

There may not be any pain greater than being helpless in the face of a loved one’s suffering. When requests for help are refused, it compounds the misery.

MaryBeth Beamer captures the agony of her husband Alan Beamer in this gone-viral video:

In response, Laura Bowley of Mindset gathered a group of her friends who live with dementia (Jan Ford, Kelly Wood, Teresa Webb, Mary Beth Wighton, Michael Ellenbogen, and Chuck Frichot) to send this message of support and encouragement:

People living with dementia are still people. They have feelings and needs, like we all do.

They may not remember clearly, they may repeat, they may behave differently than they did before, but they are still there. Their spirits are alive and well.

Don’t run away from people living with Alzheimer’s disease and other forms of dementia.

Run toward them. Reach out to them. Hold their hands. Love their hearts.

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Annie & Cricket, Fiction, Joy, Life & Living, Love, Our stories

better late than never

Holding hands painterly


“Hey Mom! There’s Stella,” Cricket said as she and Annie rounded the corner into The Home’s drawing room.

Stella sat in a big red armchair in the far corner. She looked up from the sock she was knitting.

“There you are,” Stella said smiling. “I was just about to leave because I don’t like to sit here all alone.”

“Well, you’re not alone anymore,” Cricket said. “Mom and I are here. Will you stay and chat with us for awhile?”

“Of course,” Stella’s reply was immediate. “I’ve missed you the last few days.”

Sometimes their timings didn’t match up, or one of Stella’s children took her on an outing.

Cricket rolled Annie as close as she could to Stella’s chair and stopped.

“Look Mom,” she said. “Here’s Stella.”

“Who’s Stella?” Annie stared into a space about three feet to Stella’s left and four feet behind her.

Stella, who was in her late nineties and still had all her faculties, set her knitting in her lap, reached out with her right hand and placed it gently on Annie’s knee.

“Hi Annie, it’s me Stella. I’m glad to see you. I’ve missed you.”

“Hello Stella,” Annie said. “Oh you’re a good girl.” She swivelled her head and eyes until they zeroed in on Stella, and then tapped the gnarled hand on her knee and smiled.

If Cricket had believed in God, she would have offered up a prayer of thanks. Instead, she just let gratitude flood through her for Stella, this place and the host of angels who staffed it.

Annie was recovering beautifully from a string of disasters in other facilities; after only six months in this new place she was like a different person. Cricket wished she had found The Home earlier. She would have spared her mom the suffering she’d been through the previous two years.

But better late than never.

Better late than never was her consolation.


This is the third instalment in a fictional series about Cricket & Annie; more here.

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Annie & Cricket, Fiction, Joy, Life & Living, Love, Our stories

it’s just not cricket

CRICKET-ICC-WORLD-T20-FINAL-WOMEN'S-ENG-AUS...England cricketer Charlotte Edwards (R) plays a shot as Australian wicketkeeper Jodie Fields looks on during the ICC Twenty20 Cricket World Cup's final match between Australia Women and England Women at the R. Premadasa International Cricket Stadium in Colombo on October 7, 2012. AFP PHOTO/Ishara S. KODIKARA (Photo credit should read Ishara S.KODIKARA/AFP/GettyImages)
Photo credit: Ishara S.KODIKARA/AFP/GettyImages

“May I ask you a question?” Stella said.

Stella was unfailingly polite.

“Of course,” Cricket replied.

Cricket was compulsively transparent.

Stella’s hands worked without pause. She didn’t look up.

Pearl one, knit one. Pearl one, knit one.

Cricket knew nothing about knitting, but she’d heard “Pearl one, knit one,” somewhere and imagined that’s what Stella might be silently saying to herself as the needles clicked.

“How did you get the name Cricket?”

Cricket laughed.

“What did she say?” Cricket’s mother Annie asked.

Laughter always sparked something in her, despite the dementia.

“Stella wants to know how I got the nickname Cricket, Mom.”

“Oh. She wants to know how you got the name Picket.”

Her hearing was fine. Her processing not so much.

“Cricket, Mom,” she enunciated more clearly.


“Yes, that’s right.”

“Oh dear.”

They sat side-by-side on a worn-out sofa. Multiple lacerations in the slip covers exposed the dull yellow foam underneath. Cricket had her arm around her mother’s shoulder; she pulled her a little closer.

“You know the expression ‘It’s just not cricket’?” Cricket directed her question at Stella.

“Yes,” Stella replied.

“It’s just not cricket,” her mother repeated.

“It means something is unfair. It means something unjust or just plain wrong is being done to someone or something. It comes from the game of cricket,” Cricket elaborated.

“Something just plain wrong is being done to someone,” her mother echoed.

“Yes, that’s right, Annie,” Stella agreed.

“Well, it’s not from that,” Cricket deadpanned. Stella chuckled. Annie looked blank.

“I was born in August, right Mom?”

“You were born in August.”

Repeating was a comfort, and Cricket helped Annie do it. It was a way for her mother to contribute to conversations, to feel connected, to express herself when other means failed.

“That’s right Mom. In August.”

Stella glanced up from her sock-in-progress, and nodded encouragingly.

“You used to tell me the crickets were in full song when I was a baby Mom, and I was really chirpy just like them–especially at night.”

“Especially at night,” Annie said.

“Yeah. So that’s how I got the name Cricket, Stella. From the mating sounds of insects on hot summer nights,” she laughed at the irony of telling the story on a blustery November afternoon fifty-five years after the fact.


This is the second instalment in a fictional series about Cricket & Annie; more here.

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