Transitioning my father from our home, to the hospital, and ultimately to long-term care hit us by surprise and we faced many challenges along the way. This is not a post about how to improve the system or a post about the challenges we faced. This is a post about the people who helped us along the way and who cared for my father.
Nearly 4 years ago, my father had a bad fall in his home. We discovered him in a state of delirium and without control over his body. Once at the hospital he was diagnosed with a bad case of the flu, but as the flu subsided, what we thought was just delirium turned out to be dementia. It came out of nowhere and caught us completely off-guard. Once he had recovered from the flu, we were told to take him home.
We were not ready. He was not the same and we were in no position to provide the 24 hour care my father needed. We were lost when the realization that he could not care for himself hit us. We broke down. Quietly a nurse approached and said “You don’t look ready to go home” and asked if we would like to speak with the hospital social worker and someone from the Community Care Access Centre (CCAC). We had no idea who these people were or what they could do for us, but we were desperate for help. Looking back I cannot express my gratitude enough to this nurse for just reaching out and taking a moment to ask us if we were okay.
Both the social worker and the woman from the CCAC took one look at my father (who had stripped down to nothing and was walking through the hospital hallway) and said, “no way are you leaving here today.” Our day started with overwhelming stress and anxiety, but the nurse, the CCAC case manager and the social worker all worked to relieve these feelings and walk us through the transition to long-term care. I will never forget the compassion these three showed us.
I quickly discovered that finding a long-term care home and getting my father placed was going to be a major challenge. We were in a hurry, so I arranged for a tour of a home with a wait list of only a couple months. It was a real shock to the system and it took some adjustment to accept that this might be in our future. The front lobby was also the first floor TV room and was filled with people in wheelchairs staring blankly at a small TV in the corner. The halls were brightly lit, but institutional, sterile and utilitarian. There was nothing welcoming, nothing comfortable and certainly nothing new. There were no couches, no carpets, nothing “soft” in the place. This was not the type of space you envision spending the remaining days or years of your life.
I quickly arranged for a tour of a newer facility with open spaces, carpeted floors, big couches, more privacy in shared rooms, and access to outdoor space even on the secure ward. The wait list was two years. We felt stuck. We needed to move quickly, but what we thought we wanted required a long wait.
Then things changed. I visited another home that was nothing special; same crowded halls, same institutional feeling, but I was greeted by an amazing woman. She wore her compassion on her sleeves and had a great sense of humour. She gave me a full tour of the facility and didn’t shy away from some of the home’s short-comings. The elevators barely worked, the hallways were cramped and crowded, there were no big comfortable places to sit, and the TV room was more of a place to sit rather than to enjoy entertainment. Despite these short-comings, she made it perfectly clear that if my dad was here, he would be taken care of. They offered compassion, not amenities. She immediately put me at ease and I trusted this home to care for my father. We were placed within weeks and moved my father in.
For the next three and a half years we developed strong relationships with various staff members from the receptionist to PSWs to nurses and administrative staff. It was never the fanciest place but, with only a few exceptions, my father was treated with compassion and was always taken care of. When given the chance to move my dad to a nicer, newer home, we all decided to stay where we were. The people caring for him were too good to leave and this was more important than how nice the home was.
As the end of his life approached, nurses and PSWs showed their support and in the end when we came to clear out his stuff, so many of the staff came over to hug my mom and show their respect and give their condolences. It was moving. It was almost hard to think we’d never see these people again; people who had cared so much for our family and always treated my father with dignity and respect.
Despite all of the problems our health care and long-term care systems face, despite all of the procedural challenges that exist, it is the people we encounter who make the experience what it is. Without these people and the compassion they show, I suspect it wouldn’t really matter how much we strive to improve the health care system.