Only Anecdotal

My mom died around midnight Saturday night.

She had been struggling for many years with a number of chronic conditions, all beginning with a diagnosis of rheumatoid arthritis in her forties. Over time, things became harder and harder, her lungs and heart weaker. She rallied forth, every time. She was strong, invincible I thought. But the cold she caught in a short-term rehabilitation unit was finally too much. An infection developed, and within two days, her kidneys failed. There were no heroic efforts to intubate or dialyze–my mom knew a long time ago that she never wanted those things. She talked to us for as long as she could, until she faded, and never awoke. I will always laugh as I think that she said she was sorry she would miss Downton Abbey this week.

My mom died an ideal death. The one blessing of losing my dad in 1985 was that it gave us plenty of time as a family to discuss death, and not to fear it. My dad had lung cancer, and was sentenced to certain death over three months before he actually died. In that time, we as a family spent our time in an endless cycle of work, dinner, hospital, home. Repeat. Several panics before the end–this is it–he pulled through, only to writhe in pain. I remember even as a twenty year old thinking that the fears of morphine addiction seemed ill-placed, as did the very arrogance that surgery on a dying man is a good idea. As I recall, we were never given a choice of what should happen, and if we were, we were probably still seduced by the notion of medical miracles. The last words I remember hearing from my dad are “It’s all right. It will be over soon.” He must have seen my frightened face, my anguish at the intensity of his suffering. I avoided all doctors and hospitals as much as possible–for years–until my own children were born.

I have spent an enormous amount of time in hospitals since then, in all sorts of situations. I have to say, I am most often impressed by the care and knowledge I see, and my mom had remarkably good care at the Cardiac Intensive Care Unit of St. Luke’s Hospital in Kansas City.

If the acute care of her final days was beyond excellent, the long-term care options preceding that time were filled with anxiety and frustration. Too little money to afford assisted living or private home care, she pieced things together, accepted mediocre services until they became more cumbersome to allow than to refuse. (The one exception was the man she found to drive her on errands. His name is Diego, and he could not have been kinder.) My mom worried, a lot, and she became sicker.

I was frustrated, because I am supposed to know my way around this. But then again, looking at the fantastic facilities where my mom died, considering the costs of those heroic efforts that many people do try, thinking of the enormous blessing that my mom’s Medicare and supplemental insurance will pay for it all… I imagine we can create long-term care services of similar quality. As we see the shift in the years to come from the sexy world of specialties and surgeries to primary care and prevention, we will feel the difference in our lives, all of our lives. We have to.