By: Carolann

Introduction: In this post, we explore the complex issues in caregiving and the healthcare system. It’s a heartfelt look at the struggles faced by both healthcare workers dealing with system problems and caregivers supporting their loved ones. While we appreciate the hard work of medical professionals, it’s important to also push for better outcomes and teamwork to ensure everyone gets the care they need.

Our Story Ends: By now, we were over a year into Acheron’s telehealth treatment. We’d visited the emergency room twice. In August 2023, Acheron abruptly removed me from his treatment team because of memories and actions he’d hallucinated. Acheron’s condition had worsened into alcohol-fueled insanity. In September 2023, during one of his rare clear moments, I convinced Acheron to stay with me in the US. We traveled back to Canada for visits with his telehealth doctor, and all agreed that Acheron needed a more structured program. We also decided to take a break from his SSRIs, despite his doctor’s protests.

By October, Acheron was regaining his energy and his personality was returning. He exercised daily, helped with household chores, and actively looked for work and treatment programs. In late October, he was matched with an outpatient program, but we didn’t get any instructions on the next steps.

Acheron’s liver was failing, but his medical team was unaware. His last appointment with his doctor was in early October. His doctor had his own personal crisis and became unavailable, leading to a series of postponed appointments. Acheron’s skin had turned yellow, and he bruised easily. Despite these alarming symptoms, Acheron refused to return to the emergency room, believing his upcoming doctor’s appointment would be enough. His doctor transferred him to another doctor, but Acheron never received the invite for the mid-November appointment. Because Acheron “no-showed” the appointment, it was never rescheduled.

In December 2023, Acheron bled to death in our townhouse due to a complication from liver failure.

To Acheron’s Healthcare Practitioners:

I know many of you did your best to keep Acheron alive. I also understand that both the system and individuals failed us. The purpose of sharing our story is not to lay blame but to encourage our community to demand legislative action and funding to improve the effectiveness of our system of care.

Canada’s healthcare system is collapsing due to chronic underfunding. It’s infuriating to hear people blame this on Covid or to see politicians making it a political issue instead of addressing the real (math) problem that doctors aren’t paid enough and there aren’t enough doctors to go around. In this system, the most vulnerable are deprioritized. The system lacks resilience, and when you leave, there’s a service gap that makes the system even more unsustainable.

I know firsthand that constant exposure to suffering and stress can make it hard to stay empathetic. Please understand that the frustration and exhaustion of providers came across as detached or dismissive. Acheron felt this way about me at times, too. I wish I had the energy to be better.

While detachment can be a coping mechanism, it’s crucial that the communication matches the seriousness of the situation. For severe medical conditions like a pulmonary embolism, a calm approach is essential. However, in a situation where someone is not going to literally be scared to death, an urgent response can save lives. The few times his providers allowed their frustration and alarm to show were effective, for a time. At the end, Acheron never grasped the gravity of his situation because most of the communication was flat. He saw my reasonable and appropriate emotional response to his liver and bone marrow failure as hysteria, and I had no backup from providers.

Caregivers and our loved ones are being seen at our worst, and it can be difficult to deal with a lot of mental illness and difficult behavior. I understand it’s tough to tell when someone is being sincere, lying, has a mental disorder, or isn’t functioning. Emergency work requires Fast Thinking. We need providers to take a breath and slow down when stress and familiarity with similar-looking situations leads to oversimplification and judgments.  Would treatment be different if the patient had diabetes? If yes, adjust. Dismissing concerns with comments like “He’s been drinking” is judgmental and provides permission not to treat. I believe if Acheron’s liver issues were caused by too much acetaminophen instead of alcohol, he would have received treatment.

I wanted to be seen as a partner in my partner’s care. Sometimes it felt like we were on the same team, but often it didn’t. I was often treated as a problem rather than a solution. Some caregivers do contribute to the problem, but if over 70% of caregivers are friends and family, seeing us as the cause is harmful. Our involvement should be recognized and integrated into treatment plans when appropriate.

Lastly, be open to the presenting evidence in front of you. Consider using questionnaires to track changes over time. I’ve heard from other caregivers that SSRIs caused their loved ones with autism and depression to isolate at home. Every time I asked if a symptom could be a side effect of the medication, I was told it wasn’t possible. Unless there is strong evidence otherwise, some humility is needed. There are no double-blind studies that include people with neurodivergence, so there isn’t strong evidence for any medication for that population.  If questionnaires had been used, we might have seen a connection between the medication and the onset of the symptoms.

Please reflect on these views. I appreciate dedication to patients like Acheron. I hope we can work together to create a healthcare system that truly prioritizes patient care and fosters teamwork between practitioners and caregivers. Let’s aim for a future where everyone gets the care and respect they deserve.

I also want to acknowledge the hard work of Acheron’s telehealth team. I’m convinced that anyone else would have fired him as a patient. I appreciate their efforts to provide holistic care and wish Ontario would support those efforts more.

With much love and respect, Carolann