WAM - Jean and Tom

September is World Alzheimer’s Month. Throughout the month, we are going to say hello to some of the people who have shared their stories with us over the years. For some of these people, their caregiving journey has come to an end, while others may be a further along on their journey from when we last spoke. But wherever they are, these caregivers are continuing to share their stories to raise awareness about Alzheimer’s disease and other dementias, to honour their person who lived or is living with the disease and offer support and guidance to those on their own journey.

Follow along here and on social media.

Jean and Tom

We first met Jean and Tom as part of our holiday giving appeal. Later, Jean shared her story in newspaper articles and even was interviewed by Global TV about virtual reality therapy. You can read a story about the couple in this NewmarketToday article.

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When Jean first started caring for her husband Tom, who was diagnosed with young-onset dementia at the age of 60, her goal was to be proactive to avoid sacrificing her health by caring for someone else.

“The reality is probably they, like I, have realized there is no way to do that.”

Jean gets an hour and 45 minutes of respite care twice a week, which doesn’t leave enough time to get to appointments, never mind actually attending them. She had shoulder surgery a couple of months ago and because she couldn’t get to physiotherapy, she has reinjured herself and now can’t move it without pain.

“People in prison get more time in the yard each day than I do. So I am one of those spouses who seemingly does not take care of themselves because of taking care of a loved one. A role I tried to avoid but…my hands are cuffed.”

It’s a role; however, she is happy to take on, hardships and all, for her husband.

Tom is having difficulties walking and is more prone to falling. His behaviour is also more unpredictable and he has “quite the mouth of angry verses.” While his sense of humour is still great, Jean said she doesn’t understand most of what he says.

“I never get the punch line at the end of the joke but his laughter is infectious anyway.”

COVID-19 was tough. They both have had four vaccinations and avoided getting sick. The isolation was tough, although more so for Jean than Tom.

“Because of his visions, he had lots of company.”

While Tom no longer attends the in-person DAY program, Jean still gets the virtual program, emailed daily, which she shows Tom so he can stay connected.

For now, Tom is happy and safe. Jean; however, is walking a tight rope, physically and mentally.

 “Every night I think I can’t do another day and every morning I get up and do it all again. As I say, 'One day at a time'.”