'this love is all i’ve ever known': how to deal with a loved one's dementia diagnosis
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john van gurp, right, with his wife, heather. the halifax woman was diagnosed with primary progressive aphasia, which is a form of frontotemporal dementia, in october 2021.
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months before her diagnosis, john van gurp knew something was up with his wife heather.
although she was diagnosed in october 2021, the halifax man started noticing issues—like confusion, memory problems, and some slight personality changes—earlier that spring
the diagnosis from a ct scan was primary progressive aphasia, which is a form of frontotemporal dementia, explains van gurp. it’s the same condition that actor bruce willis has.
van gurp was heather’s primary caregiver from the onset right up until march 20, 2025. he continues to be involved in her care but to a much lesser degree, he says, since heather has moved into the long-term care facility, northwood care, in halifax.
the last two-and-a-half years have been intense, he says.
“we were very lucky to have been able to retire in our late 50s, so we had four years together before dementia came to live with us. we are both now 64,” he says.
documenting dementia journey
throughout this journey, van gurp has been documenting their journey through dementia on social media. he has posted a few things on tiktok but now is almost exclusively found on youtube.
at the beginning, he had 200 to 300 subscribers—mostly friends and family—but the site rapidly took off when van gurp started sharing videos of their situation at home with heather’s dementia. today, his channel, john and heather’s dementia journey, has over 38,000 subscribers.
it came as a big surprise, he says, as he didn’t set out to grow a youtube channel.
“the main reason i started recording videos was to have a record for doctors or other care needs going forward. i also wanted to be sure myself of what happened and when it happened in case i needed to talk to a doctor or a specialist at some point,” he explains.
on each of his videos, van gurp receives hundreds of comments, and 99.9 per cent of them are empathetic, understanding and curious. most subscribers are over 60 years old and 80 per cent of them are female.
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“it became obvious pretty early on that this was going to be a form of therapy for me. i’m a real introvert, so it’s the perfect way to reach out to people and share my story, because i can express myself without the back-and-forth of social interaction, which often results in the listener telling their own story about a relative who has dementia,” says van gurp.
although he doesn’t mind listening to people for therapy, the main goal is to be able to tell his story without interruption. youtube is perfect for that, he says.
through his channel, van gurp hopes to show what daily life with dementia is like, including the ups and downs of caring for someone with dementia, along with the emotional challenges, practical tips, and moments of joy.
he discusses coping strategies like strategies for managing stress, finding support, and maintaining your own well-being.
another important aspect is advocacy: raising awareness about dementia and the needs of caregivers, advocating for better support and resources. and finally, van gurp highlights recovery from life as a caregiver after a loved one moves to long-term care.
john van gurp met his wife, heather, when they were 16 years old. heather’s dementia diagnosis was heartbreaking for the halifax couple. contributed
10 tips for caring for family members with dementia
many families are caring for loved ones with dementia and may be struggling. to help, van gurp shares his best pieces of advice and lessons learned.
- reach out for support early on — call your local alzheimer’s society help line and contact organizations like nova scotia continuing care and caregivers nova scotia.
- identify your important people as soon as you can. figure out who you can lean on as you go forward for unconditional and reliable support — people who will accept you at your best and also your worst. “think of this as your trust circle,” says van gurp. “you can have a bigger circle of people who you can talk to, and who will support you, but this trust circle will be there at your side when you need them, with their hands right in there doing whatever work has to be done.”
- schedule time for yourself — don’t lose your social connections. if you’re in a club or taking a course, try to keep doing it no matter what. try to schedule that time with relief so that you don’t miss it. “it should be nonnegotiable. it’s a time when you can completely tune out and do your own thing,” he said. for example, van gurp has been playing in a local percussion band called samba nova for many years and continued to do that every tuesday evening over the last years of heather being at home. it was non-negotiable, he says, as that was his social connectedness.
- there’s no fix or cure — learn to accept this and just make the most of your time with your loved one
- buy a portable bidet bottle for each of your bathrooms
- declutter your home if you can — it might end up serving as a care facility as the disease progresses, and the less stuff you have falling off of shelves and gathering dust, the better.
- take advantage of technology — buy some security cameras so you can watch your house inside or watch your doors. get some door sensors that tell you when doors open and close. use trackers like airtags or install a tracking app like life360 on your loved one’s phone. if you find you’re going to need to schedule care helpers, use an app to keep everything straight.
- get comfortable asking for help — you can always use an extra casserole in the freezer or help with everyday tasks like buying groceries, cutting grass, shovelling snow or getting an oil change in your car. “people want to help, take advantage of it,” van gurp said. “at the same time, don’t hesitate to tell people that you are tired and can’t have them visit. just be open and honest, and don’t waste time with too many social niceties. your trust circle will understand and cut you a lot of slack.”
- forget about perfection, just take each day as it comes and don’t hesitate to let things slide here and there. “your goal as a caregiver is to keep your loved one safe, healthy, and as mentally happy as possible. everything else is extra,” van gurp said.
- practice some simple “mantras”: things like, “you’re not a 7/11, you can’t be open 24 hours a day,” “you can’t pour from an empty glass,” “there’s nothing you can do, it’s out of your control,” “i’m doing my best and that’s enough,” and the most important one of all: “i am not alone/you are not alone.”
“heather and i met when we were 16, so this love is all i’ve ever known,” said john van gurp, pictured here with his wife, heather. contributed
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how do you let go of a loved one?
the hardest part of all of this over the last four years, says van gurp, has been letting go.
“heather and i met when we were 16, so this love is all i’ve ever known. we’ve been best friends for that whole time. how do you let that go… i don’t know, it’s a daily thing, trying to figure it out,” he says.
being her caregiver has been his entire purpose for the last four years; prior to that, it was being the best husband he could be. this was a major part of his identity. he’s struggling, trying to figure out how to let go of that now.
he has now entrusted her care to others, but that took a lot of mental gymnastics to accept, says van gurp. he still involves himself in her care daily, but says he sure feels like his marriage is over, even though she’s still there.
“i still tell her i love her, and i stroke her hair and kiss her cheek,” he says.
john van gurp, left, and his wife heather began documenting their experiences with heather’s dementia diagnosis on youtube. contributed
coming home to the house by himself on that march 20 evening was the hardest he’s ever done, and he cried a lot of tears that night and several nights afterwards.
it’s a constant, slow burn of grief, he says.
he doesn’t have all the answers, but says he is incredibly lucky to have a circle of incredibly supportive family and friends.
this article was originally published in the st. john’s telegram on may 20, 2025.
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