Lessons from a long week

I flew down home on very short notice on Saturday, June 26, to spend a few days with my mother, who was not expected to live long enough for my planned visit in mid-July.

While waiting for my plane to Halifax, I started to read Elisabeth Kübler-Ross‘ “On Death and Dying”. I say “started” because I didn’t finish reading it, nor do I think I ever will. The book and the concepts in it were revolutionary in 1969 when the book was first published. But the way we approach death and dying is different now, a testament perhaps to the far-reaching effects of her work and others after her. The book itself isn’t disturbing, but neither was it helpful to me, which is why I stopped reading it. Instead, I started researching the end-of-life process, looking for cold, hard medical facts to help me prepare myself for what I might find when I landed in Halifax.

What I found was sad and surreal but occasionally also quite funny, as only my mother can be.

A week ago, my mother was moved from her ward bed, where she was waiting to move into a long-term care facility, to a private palliative care room where family members can stay with the patient. On Monday, we all agreed to the cessation of all medication except that required to keep her comfortable. So no more cholesterol drugs, no more insulin, but lots of Dilaudid and Gravol and other goodies to ease her way. (As an aside, the new Infirmary in the QE II complex is a good place to be if you have to be somewhere like that — the nurses looking after my mother are marvelous, the palliative care room is as homey as a hospital room can be, and families are given the time and care they need. I’ve heard bad stories about end-of-life care but not there.)

I stayed overnight at the hospital for the last few days of my visit so that I could spend more time with her. The drugs and the aftereffects of the stroke (and perhaps the nearness of the end) make her hallucinate so nights can be long and sleepless, but I treasure those hours with her. They may well be the last ones we’ll share. She’d essentially stopped eating and drinking on Sunday and by Wednesday morning it looked like it might all be ending soon, but she rallied on Wednesday afternoon, enough that we actually took cheesy photos.

So the long wait begins again…or is that “continues”? Death is inevitable and near. No matter how well she rallies, the late stage ovarian cancer is going to get her, if the uncontrolled diabetes or renal failure doesn’t get her first. It’s only a matter of time. Weeks or perhaps even days. Things can go downhill so very fast. I couldn’t stay for the duration, but I call several times a day — I don’t want to ever feel like I missed a chance to tell her — or my father — how much I love them.  You really can’t say it too often. If you think you say it enough, just say it one more time anyway. The only regret you’ll have later on is that you didn’t say it more.