All’s well

Hospice Prince Edward has had a bit of press recently, especially about the potential to create a residential hospice here in the County to provide end-of-life care in a setting away from the patient’s home, specializing in “palliative care, advanced pain management and bereavement support”. Quality living.

So, what I do know about living is the terminal nature of it—the beginning, the middle and the end. In the past three years LOML and I have said our goodbyes to our parents and wondered if there could have been a better way for them to die. Yes, I meant “a better way”. My mother-in-law and my parents enjoyed their retirement years travelling around the world and spending time with their families. As they celebrated birthdays well past 80 years, both families stood by wondering what to do to make their exit as great at their entrance and their time on life’s stage had been. We actually talked about what we would do if one of my parents went before the other or if any one of them should happen to need care beyond what they could provide for themselves. And, for the most part, we didn’t know what to do. As it turned out none of our parents were physically well in their final months. Both of my parents spent their last days in a hospital bed, hooked up to monitors and IVs. My mother-in-law faired a bit better, but not by much. Over a two-year period, we, the kids, couldn’t agree upon what would be best for them and really, it sounded more like what would have been best for us.

Mostly, all of us were still working folks and couldn’t risk taking time off to be full-time caregivers, although we took turns staying with my parents during their “hospital days”. When we did find time to lighten up and be more objective, we joked about writing the book on the subject of parenting the parents. I, for one, thought it could have been a book for Dummies, possibly entitled “How to Get Them to the End of the Line without Crossing the Line with Them”. Come on. You’re nodding your heads. If you’ve been there, you know it’s true. And it’s not like a hospital-appointed sociologist didn’t find her way into our lives at Toronto East General—where my parents spent their last days.

She dropped by with her clipboard and her clipped sentences. After listening to her talk about my mom, and then my dad, as if they weren’t right there in the room, she handed over a “post-it” note with phone numbers for nursing homes (all conveniently located within a 75-kilometre radius), pamphlets filled with bullet points on eldercare “in your home” (where to rent a hospital bed, a bedpan, a wheelchair and gates to keep the rascals in their room) and her office number, in case we decided to do—to do what? We didn’t get her point.

What were we supposed to do, pack up our parents and take them home? And, then what? We decided she was speaking in some kind of administrative code and just wanted their beds to be vacated for people who were “on the mend”. Home care was never properly explained to us. We were told a bed in a nursing home meant putting the parents on a “waiting list” and each had needed special care near the end—something many homes weren’t prepared to give. Not once did anyone mention hospice, as if it were a bad word. (The only real offer of assistance came from a woman who lives in the County and works for Community Care for Seniors. Alas, my parents and my mother-in-law were not County residents.)

Had someone spent a moment suggesting and explaining hospice care, I’m sure our reaction would have been shock and then ahh, but, no one did. It’s a great big city, Toronto is, and services abound, but folks get lost in a system of impersonal, decision-making especially when elderly parents are involved. But,Toronto isn’t the County.

My point is, and I do have one, my family and I needed more than an efficient hospital administrator with clipboard, a handful of booklets and a phone number to connect us to someone who didn’t really give a hoot and damn about us or our parents. What we really needed was support and compassion. We needed to know if we were making the right decisions for our parents and maybe we needed a nudge, in the right direction, when we weren’t. We all need a Hospice Prince Edward.

theresa@wellingtontimes.ca