WAM - Lori and Randy

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.

Lori and Randy

We first met Lori when she wrote a story for our Hearts Linked by Courage book. Her family has participated in a number of fundraisers for AS York in support of her husband living with frontotemporal dementia (FTD), and last year was part of the holiday appeal

For Lori, the decision to place her husband of 44 years in long-term care came with the help of family and the realization she just couldn’t do it anymore.

“I felt I was no longer Randy’s wife, but a full-time caregiver…I realized this is not the life I want nor would Randy want it to be this way either. Physically, I could not do it anymore.”

Lori said her family noticed the toll of caring for Randy: she rarely left the house and visits to her family and friends stopped.

Randy went into long-term care early this summer. While she misses her husband terribly, she said the timing was perfect: being summer, she was able to make plans with friends and family, something she couldn’t do when she was a full-time caregiver. It also worked for Randy. The warmer weather meant his grandchildren and friends from work popped by for outside visits.

“(Randy) adjusted well, although it is difficult to sincerely know because he is non-verbal and does not show any reaction.”

Lori said he hasn’t changed since moving into long-term care home. He doesn’t seem to be stressed and his character has remained the same.

Lori visits Randy every day, usually at mealtime, taking him outside for a walk.

“This (going outside) is something I could not do at home.”

For those struggling to make the decision about whether to put their person living with dementia in long-term care, Lori has some advice: long-term care staff “may not replace you, but it is a calming feeling that you no longer have to physically do the caregiving.

"You can visit as a wife, husband, child and not have to worry about (your person’s) care.”

Dementia, Lori said, is a horrible disease and watching the person you love live with it is a “struggle for the mind, body, and heart. I still wonder how did I manage over the last three years caring for Randy and all the frustrations and worry.”

Part of it was programs and services offered by the Alzheimer Society of York Region.

“The Alzheimer’s Society of York Region was there to help in ways you never thought possible. I joined support groups, workshops, kept in touch with my support worker, attended a few speaker events. The best program that I will always be grateful for was the DAY program, which Randy attended almost every day.”

While dementia robbed Randy of his voice, Lori said she is grateful her husband is still physically well and that she gets to see the occasional smile.

“The family no longer can see the wild and crazy party-goer guy he was known for, but we all have to assure ourselves that his heart is still the same.”