Change the Game

Categories: Care Partners, Need to Know|By |Published On: |

Caregiving is a lot like mastering a strategic game with unique challenges and successes

Illustration by Rebecca Middlebrook.

Illustration by Rebecca Middlebrook.

While caring for his father, only-child Ron Beleno quickly learned how exhausting and emotionally draining the work could be. His father, Reynaldo (Rey), lived with dementia for 10 years before passing away peacefully at home in Toronto in 2018. In the early years after his diagnosis, Rey still practiced a measure of independence — he took the bus and went for walks regularly. But one day, after a few years of living with dementia, he didn’t return home froma walk and went missing for several hours. Ron called the police to help locate his dad safely, who had ended up nearby his former place of work. That jarring experience made Ron rethink his approach to caregiving.

We’re all playing the same game, and the game is against the challenges that come with dementia.

— Ron Beleno

“After that, I said [to myself], ‘What do I need to help us take on this challenge?,’” he says.

Ron, who has always loved games — from video games to board games to sports – realized he could approach caregiving with the same strategic mindset he used to tackle a game.

“We’re all playing the same game, and the game is against the challenges that come with dementia,” says Ron.

Ron says the “gamification” of caring for his father helped with navigating the highs and lows of their years together more successfully. Here, he shares tips for gamifying the caregiver experience.

Get your head in the game

Dementia comes with many hurdles and can present a variety of obstacles, such as maintaining a person’s safety, taking care of your own health, dealing with finances related to care and more. Instead of allowing yourself to be caught off-guard by these issues, start viewing them as obstacles to expect and prepare for.

“The shift is understanding that dementia is pretty much a game of challenges related to what each person wants in their lives,” says Ron.

Work with your team

“Are you doing this as an individual superhero or as a member of a team?” Ron often asks the crowds in the caregiver workshops he speaks at in Canada and across the world. His point is you need support, and you will have more success when you’re part of a team.

Ron’s A-team included his father, his mother and their family cat, Lucky. He also purposely created the team to include health-care professionals, researchers, the Alzheimer’s Society, local businesses and friends and neighbours.

“As challenges became heavier over time, [my dad’s] ability to be a teammate became difficult, but it was my mom, myself and other team members who helped him and each other,” says Ron.

Failures are opportunities

Nobody succeeds at everything all the time, and the inevitable failures that happen while caring for another person can provide valuable lessons.

“In the end, we’re all going to have failures. But can those failures either be smaller failures [the next time] and can we get larger successes?,” says Ron.

In the example of his father getting lost, Ron saw a learning opportunity and set up a safety net to support his dad to prevent it from happening again.

Set objectives

Most games, from soccer to Monopoly, have a clear objective: to win. While caregiving for another person, however, Ron says everyone’s objectives will be different. The key is to start developing both personal and team goals, and then make choices that work toward them.

One major goal his family had was for Rey to age at home. Rey also wanted to stay socially active, continue to play music, cook and go out to restaurants. Ron achieved this by setting up their home to support his dad’s wishes. The doors were equipped with chimes, while GPS tracking and support from neighbours and local businesses allowed Rey to continue to walk on his own safely for longer than expected.

Develop your skill set

Basketball players work on things like dribbling, defending and shooting to be successful. Similarly, caregivers need to develop their own arsenal of skills. Skills such as better communication techniques or learning how to advocate for patients are the types of things caregivers can cultivate.

Keep score

Ron says it was important to keep track of what he was investing his time, emotions and money in, and then monitor the return on that for his family.

“[At points during caregiving], my fear level was high, and my confidence was low. [I thought] what do I need to do to get better returns on that?,” says Ron.

For Ron, the best investment was a GPS device that allowed his dad to walk safely alone. It gave Ron more peace of mind and offered his dad the ability to live well and continue to age at home. [ ]