In 2001, Jari was diagnosed with a rare spinal cord tumour and required surgery to have it removed. Jari’s wife and caregiver, Christiane, says, “In the years following the operation, he began to complain more frequently of headaches. Over time, his physical condition slowly deteriorated — he was not able to stand in the shower, he was incontinent, there was some memory loss, and he became generally apathetic.”
Jari’s condition had worsened to such an extent by 2012 that Christiane, alarmed, took him to the emergency room at the Toronto Western Hospital (TWH). After Jari was given an MRI, a neurologist diagnosed him with superficial siderosis (SS). A rare condition, SS is caused by the leaking of blood into the tissue surrounding the spinal cord and the brain. This buildup of blood in the tissue produces neurological dysfunction, including a decrease in executive function. Jari was trialed on an experimental drug to improve his functioning.
Despite his treatment with the drug, Jari continued to slowly decline over the next five years. Christiane, even with support, found it increasingly difficult to care for him at home. Following a medical emergency in 2018, Jari was admitted to the TWH. At that time, Christiane pressed the health care team to place her husband into a complex continuing care (CCC) facility so that he could receive the appropriate care.
Jari was admitted to the CCC program at The Salvation Army Toronto Grace Health Centre (TGHC) in April 2018. In consultation with Christiane, the interprofessional health care team devised a plan of care for Jari and began working with him on his rehabilitation goals — these included such things as transferring from his bed to a wheelchair and completing his activities of daily living (ADL) (washing, shaving, administering a catheter by himself). He was also enrolled in the memory clinic, where he showed improvement.
“I appreciated the fact that the interprofessional health care team at TGHC listened to the caregiver,” says Christiane. “For once, I felt I had a voice — we were able to work together collaboratively, and Jari got better and seemed to thrive.”
In January 2020, Jake Tran, the TGHC’s president and CEO, approached Christiane, suggesting that Jari would be a good candidate for a community pilot project that the TGHC had developed to provide Alternative Level of Care (ALC) for inpatients. The TGHC, he told her, could provide additional support that would allow Jari to return home. The pilot project’s use of technological advances enables inpatients to be safely discharged to in-home settings by providing them with the necessary in-home monitoring support.
At first, she was resistant to the idea because Jari was doing so well at the TGHC, and eventually Christiane agreed. In October 2020, Jari returned home. “When he came back home, Jari was so happy. This is truly where he belongs” says Christiane.
Christiane receives support from the TGHC and has access to a physician, the interprofessional health care team, and the TGHC’s outpatient pharmacy. As well, the TGHC provided non-medical monitoring for Jari so that she can confidently leave to run an errand or take a walk, which helps prevent caregiver burnout. Christiane is also supported by Ontario Health-Home and Community Services. She believes her decision to enroll Jari in the remote care monitoring pilot project was the right one.
Christiane is currently involved with the TGHC’s Patient and Family Advisory Council, as well as the advisory committee for the pilot project. She feels that this involvement has extended her voice, allowing her to effect change that will help patients and their caregivers. “What we’re trying to do with this ALC remote care monitoring pilot project is provide the right support, at the right place and at the right time. It brings joy into our hearts to be back home together. I truly believe in this project,” says Christiane.