A Husband Videos His Dementia Caregiving Journey

At part of their daughter's wedding ceremony, Heather was supposed to give their daughter a necklace that had once belonged to Heather's mother.  Heather's husband, John, talks about what it was like when he and his daughter realized Heather had not brought the jewelry. "Our daughter actually took me aside before the ceremony and said, 'Dad, I've been wondering about something and I have to ask. Does mom just not care anymore or does she have dementia or something?'"

In four short years, John Van Gurp watched his loving wife, Heather, fade from a beautiful, vibrant, creative, multi-tasker to a woman who can no longer dress herself, feed herself, or manage personal hygiene. Her decline has been fast. 

Like so many others in his position, John hoped his wife had been afflicted with something manageable. But after assorted labs and scans, the diagnosis was primary progressive aphasia, a form of dementia. 

For his own well being and to help other family dementia caregivers, John created a YouTube channel where he could post videos about the experience of caring for Heather.

John came across episode 21 of this podcast where I shared a concept I call "anticipatory healing." He mentioned it on his blog. The internet brought us together and, in no short order, John agreed to be my guest on the podcast and talk about the journey he is taking with Heather, his wife of almost 40 years. 

John talks candidly about the challenges of managing what had always been Heather's tasks. "Suddenly I'm responsible for all the linens in the house, all the bedding and blankets and cloth stuff. I have no interest or, or knowledge or expertise in cloth stuff like curtains and pillows. Heather loved this stuff. She used to decorate with pillows and blankets. And I remember thinking once, Honey, you've left me. You've gone to live in your head and you didn't leave any instructions. ... I'm getting emotional here thinking about it, but you know, ... we didn't have a chance to talk about it. And you know, that's tough. That stuff is tough. The handover. Yeah, the handover is, is awfully hard." 

You can watch videos of John and Heather's caregiving journey on his YouTube channel. Just search for "John and Heather's Dementia Journey."

Are you caring for a spouse with dementia? Have you written a book about dementia?  Please let me know. I'd love to speak with you. Send an email to: zita@myspousehasdementia.com