“I’m grateful for the help that we get from Casey House, because now I can concentrate on staying alive. Without Casey House, Peter and I couldn’t make it on our own. Things are different now, with me in this wheelchair and having to depend on Peter for everything. This isn’t what we ever imagined in our lives. But at least with Casey House, with their help, I know I can do it.”
-Richard, Casey House client (pictured with his partner Peter)
Richard Gravett and Peter Crawford have been together for over 20 years. Now retired, they share a beautiful home in Toronto’s Leslieville. They have an extensive garden, which they both once loved to tend together. (“It’s actually more like we have a love-hate relationship with the garden,” clarifies Peter today as the couple shares a laugh about a mishap with tulip bulbs.)
Despite Richard’s HIV diagnosis 19 years ago, he remained in good health for many years. The couple maintained an active social life and volunteered in their community.
“We always knew about Casey House,” says Peter. “We knew people who died of HIV/AIDS. In fact, 15 years ago, we designated Casey House in our wills as the beneficiary of half of the proceeds of our house sale when the time comes. We wanted to support Casey House then because we knew of their good work. But somehow, it didn’t occur to us that we would need that help ourselves one day.”
But then one day in early 2013, the world came crashing down.
“I was upstairs,” recalls Peter. “I heard a bang from the living room, which I didn’t think too much about. I thought Richard had simply dropped something. And then I heard a second crash, really loud, and I knew something was wrong. I came running downstairs and found Richard slumped on the couch. When I couldn’t get him to respond, I called 911.”
Richard had had a massive stroke. The swelling in his brain had left him unable to speak, with much of his right side paralysed. He was admitted to the intensive care unit at a local hospital. The doctors informed the couple that it was unlikely that Richard would survive, and if he did, he would likely have severe brain damage.
Years earlier, Richard and Peter had discussed their end of life plans and appointed each other as POA. Richard had expressed his wish that if he was ever paralyzed and incapable of communication, he would not want to be kept alive with heroic measures. In shock and pain, watching Richard suffer, Peter told the hospital team of these wishes.
Once stabilized, Richard was rapidly assessed for brain damage. The couple was informed that he would not be a candidate for rehabilitative care, as the damage to his brain was thought to be irreparable. Richard was transferred to a palliative care hospital. After a two week stay, he expressed his wish to go home to die.
At home, Peter struggled to meet Richard’s extensive care needs. It was exhausting and confusing, with many care providers and equipment suppliers coming and going. One night, nearly collapsing from fatigue, it occurred to Peter that he could call Casey House for help.
The next morning, Jennifer, a Casey House registered nurse in the donor-funded community program, was at their door. “I was amazed that there was no wait at all,” says Peter now. “I called, and the next day she was here, ready to help.”
During one of Jennifer’s visits, she asked Richard if he could move his right leg. He could not. But then Peter got a piece of ice from the freezer and dropped it on Richard’s leg. Richard reacted, jerking his leg.
Today, Richard recalls that moment with a joyful laugh: “I yelled, ‘I can move! I don’t need to die! I can live!’” It was at that moment that the couple once again discovered hope.
The search was on for a rehabilitative hospital and program that would admit Richard. It was far from easy. With the help of the Casey House team, Peter and Richard navigated many administrative hurdles to move from the palliative care system back into rehabilitative care. They persevered, and eventually, Richard was safe in rehabilitative care once again.
Today, two years after his stroke, Richard still requires a wheelchair and the couple has had to make many adaptations at the house to accommodate his equipment. Richard gets massage therapy at Casey House to help with his pain, and the Casey House team visits them at home regularly to monitor and ensure that Richard’s good health is maintained. A personal support worker comes to the house for a few hours each week, funded by Casey House donors, so that Peter can go for a walk or run errands without worrying about Richard’s safety back home.
“I’m grateful for the help that we get from Casey House, because now I can concentrate on staying alive,” says Richard. “Without Casey House, Peter and I couldn’t make it on our own. When Jennifer and Glenna come here, they’re smiling, they really care. They make a big difference for me. Without them, how could we manage? Things are different now, with me in this wheelchair and having to depend on Peter for everything. This isn’t what we ever imagined in our lives. But at least with Casey House, with their help, I know I can do it. And we’re doing pretty well. So I want to say thank you.”
Says Peter, “Money cannot buy the care and love that we receive from everyone at Casey House. As soon as you walk into Casey House, you see that the caring goes way beyond what you’d expect from a normal hospital. If donors want to know where their money goes, and what they’re supporting, they should know how special it is. Yes, when you give, you get a tax deduction, but you should also be proud that when you give to Casey House, you’re helping this very special type of care. I know this because it’s the reality for Richard and me every day.”