A Winning Connection Through Volunteer Hospice Program

A Winning Connection Through Volunteer Hospice Program

May 13, 2019

From the outside, it’s an unassuming family home on a quiet street just north of Toronto. But walk through the front door and into the living room, and you’ll find two dedicated co-managers of a major league sports team analyzing stats, making trades, and reviewing highlights in a bid to secure victory over their rivals.

To clarify, we’re talking about a fantasy league – a type of online game where participants assemble a virtual team of real players of a professional sport. But what’s remarkable about this particular duo compared to their online opponents around the globe, is that their conversations about stats and strategy are conducted solely through eye movements.

For Randy, a retired physician, and Viktor, a former electrical engineer, the game is a welcome break from reality that has forged a true friendship between the two men. Randy and Viktor were matched last summer through Circle of Care’s Hospice Visiting program. Viktor, who was diagnosed in 2017 with ALS (Amyotrophic Lateral Sclerosis, also known as Lou Gehrig’s disease, or motor neuron disease), can fully comprehend what’s happening around him but no longer has the ability to move or speak. However, thanks to eye-gaze technology, which translates one person’s eye movements into computer-generated speech that the other can understand, the two are able to communicate easily during their twice-weekly visits.

Prior to Viktor’s diagnosis, the father of two grown boys was a robust workaholic and a champion swimmer in his youth. Together with Olena, his wife of 33 years, the family left their native Ukraine 11 years ago to build a new life in Canada.

Now that their boys have left home to follow in their father’s footsteps as engineers, Olena is Viktor’s sole caregiver – a daunting role some days given the complexity of Viktor’s condition. Although the family is also supported by at-home nurses, PSWs and a visiting physician, Olena struggles to find time for herself and admits to feeling overwhelmed sometimes by the exhausting toll that caregiving can take.

“We feel so blessed and honoured that Randy has come into our lives,” says Olena. “Twice a week for two hours, I can finally relax and leave the house because I know that Viktor is in good hands and enjoying himself.”

Viktor also acknowledges his gratitude for the caregiver respite that Randy’s visits provide his wife, as well as the diversion of their various pastimes. “He is such an open-hearted guy,” Viktor writes through his eye-gaze keyboard. “His personal skills and patience with me are amazing.”

For his part, Randy enjoys the challenge of finding entertaining ways to interact with Viktor, but admits it’s not always easy to find activities that match them on a level playing field. “For a while we were playing chess. I went in thinking I had moderate ability, but Viktor took no prisoners, demolishing me every time,” he laughs. “For a while I was taking the humiliation with acceptance, but it was time to move on so now we’re into backgammon, which is more enjoyable for me because it seems to have more to do with chance than skill!”

Now that baseball season is in full swing, the pair is hard at work learning and strategizing the next move for their all-star baseball lineup. “We had some moderate success with our fantasy NHL hockey team, but neither of us knows all that much about baseball, so I guess we’ll just venture for the best!”

Circle of Care’s hospice/palliative care program, accredited by Hospice Palliative Care Ontario, helps to improve the quality of life for those living with a terminal or life-limiting illness, and provides support for family members by recognizing and addressing the need for psychological, social, and spiritual care. In addition to our non-denominational hospice program, Circle of Care is proud to partner with Jewish Family & Child to offer a special program designed for the Jewish community.