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machado: dementia steals people, but also the future plans of those who love them

a recent healthing story about life with someone who has early onset dementia has readers talking about how losing someone to brain disease changes everything.

by lisa machado

published mar 19, 2023

4 minute read

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4 minute read

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"we lost everything," said one reader of her dementia experience

one reader called her life after dementia "a train wreck," and talked about what it's like to feel sadness and worry daily and absorb hurtful words said by ill loved ones. getty

last week we published a story about cindy mccaffery, who has been supporting her husband john ever since he was diagnosed with frontotemporal dementia (ftd) 14 years ago at age 48. i haven’t read or heard many positive or hopeful stories about life with brain disease, but john functions fairly well day-to-day, his memory is intact and he is in good physical health. he even drives. our readers agreed that it was an extraordinary story, inspiring and upbeat. but for many whose experience with dementia has been everything but hopeful, it was also sad and discouraging.

a dementia diagnosis at age 57

“we lost everything,” one woman wrote of her experience of dementia, writing that her story “isn’t as encouraging or uplifting” as john’s story. her husband, who she referred to as a “shell of a man” and a “stranger” was diagnosed at age 57. “the loss is absolute. my heart aches for the funny, talented, smart, adventurous man i fell in love with 27 years ago,” she wrote.

others echoed that sense of loss that comes with watching someone you love disappear.

“she is in limbo between life and death, but closer to death and i can’t help her,” said a husband, whose wife had just moved into a care home.

“it wasn’t in the plan,” wrote another reader, who said she had dreamt of sleepovers with the grandkids and camping trips. “i am trapped.”

dementia stole dreams of sleepovers with grandkids

i remember my mom facing all of this too as my dad descended deeper into dementia. his illness had a profound impact on our small family. we were like a house that had suddenly lost one of its supporting pillars — standing precariously in a storm that we had no idea how to navigate, knowing we could topple at any moment.

unlike john, once we had an official diagnosis to explain bouts of confusion and memory loss, out-of-character angry blowups and extreme apathy toward just about everything that he used to love, my dad quickly lost his cognitive abilities. and despite efforts to do all the things that are supposed to help slow brain degeneration — exercise, whole foods, vitamins, social interaction (my mom even got him doing those brain games) — the downward spiral became faster.

he would get lost on streets that he knew well, struggle to remember who we were, and happily talk to photographs in magazines as if the shiny smiling faces were old friends. soon after came aggression, seizures, incontinence, the inability to dress himself, walk, eat, and then finally, to swallow.

but before this massive obvious decline, in addition to behaviour that was completely unlike his soft-spoken nature, he had also made nonsensical financial decisions without my mom’s knowledge, things that she is still recovering from today. still, it could have been worse. when my dad moved into a care home, a woman whose husband — also with dementia — was moving in on the same day, told us that he had given their life savings away to a woman he claimed to have married.

“it’s about more than just the disease,” wrote one reader, whose spouse’s poor financial decisions were only revealed once he had passed away. “it makes people do things that can ruin a family. i will never pay off the money that we owe.”

dementia “makes people do things that can ruin a family”

describing the “train wreck of a life” (as she put it) her husband left for her, she, like all the others who shared their experiences, also talked about what it’s like to feel sadness and worry daily, to absorb hurtful words said by ill loved ones, and manage the emotional and mental fatigue of caring for someone incapacitated by dementia. but what came through most in her note was a deep sense of missing something very important that’s gone forever — the loss of a person she cared about, sure, but also the grief of losing the future that had been planned for.

“grief is a one-step-up, one-step-back, sort of thing,” she wrote, noting that it had been 13 years since her husband passed away. she often dreams of what used to be, she said, in frames of the very distant past — the kids as babies, the cottage, the big bass caught in florida.

“thirteen years, and i still can’t get over what that disease took from me,” is how she ended her note. in the next few weeks, we’ll be telling her version of the living-with-dementia story.

it’s true that john and cindy’s experience might not be the one you hear about often when it comes to dementia, but it’s an important story to tell. after all, its glowing hope is irresistible — even while it may poke a bit at your own bad luck. if only i, like cindy, had had a few more years with my person who had dementia … and why didn’t i? then i go back to the hope that’s threaded through her story. it’s the same hope that’s our best shot at getting to the other side of the awful hollowness of grief and loss in one piece.

lisa machado is the executive producer of healthing.ca.

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lisa machado

lisa machado began her journalism career as a financial reporter with investor's digest and then rogers media. after a few years editing and writing for a financial magazine, she tried her hand at custom publishing and then left to launch a canadian women's magazine with a colleague. after being diagnosed with a rare blood cancer, lisa founded the canadian cml network and shifted her focus to healthcare advocacy and education.

machado: dementia steals people, but also the future plans of those who love them

a recent healthing story about life with someone who has early onset dementia has readers talking about how losing someone to brain disease changes everything.

a dementia diagnosis at age 57

why are women more at risk for alzheimer's disease than men?

can a lifetime of learning put the brakes on dementia?

dementia stole dreams of sleepovers with grandkids

dementia “makes people do things that can ruin a family”

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machado: dementia steals people, but also the future plans of those who love them

a recent healthing story about life with someone who has early onset dementia has readers talking about how losing someone to brain disease changes everything.

a dementia diagnosis at age 57

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