04/24/14: Navigating end-of-life care

This op-ed appeared in The Virginian-Pilot on the date shown.

WE ALMOST lost Mama last week. Three years after she walked into a nursing home, the dementia has robbed her of nearly everything, both mentally and physically.

The latest to go is her ability to swallow. I’m told it is just a manifestation of the disease: The brain no longer sends signals telling her to swallow.

So she wound up in the hospital, dehydrated. After she was stabilized, she was returned to the nursing home. The doctor told me there was nothing else they could do.

I’m told the next progression of this cruel disease will be that she forgets how to breathe.

It’s been a long time since Mama knew who I was. Perhaps one of the hardest days I had was the one when I realized that. She was better at hiding it than I knew.

As I look back, her ability to recognize me — by face, by voice — had been slipping even before she went into the nursing home. I was watching a video I took on Mother’s Day in 2010 — all of the signs were there, but I just missed them.

My Sunday visits to play the piano while she sang stopped last summer. She’s completely bedridden now and sleeps most of the time. When she is awake, she’s often agitated, another symptom of dementia.

Her care now consists of making her comfortable. We await the end without any idea of when it will come. My siblings and I plan for the inevitable.

But what my family experienced over the past week or so goes beyond just our mother. It highlights the holes in our medical system and the patchwork of rules that make end-of-life care decisions more difficult.

My eldest sister and I have divided the responsibilities for taking care of my mother. She handles the medical, I handle the financial.

But she was out of town last week. The palliative care coordinator at the hospital used the lack of a medical power of attorney on file to stir dissension among our family, as we discussed such things as a feeding tube and what, if anything, our mother could have by mouth. The coordinator had her own agenda, contradicting that of the doctor and went from sibling to sibling, telling different tales. It took a while to sort that out.

My mother was released from the hospital Monday evening a week ago. Somehow, the doctor’s orders never made it to her chart at the nursing home, a fact confirmed on Wednesday when another sister and I met with the assistant director of nursing. I left the nursing home that day thinking everything had been taken care of, including the arrangement for hospice care.

Friday morning, I discovered that the results of our Wednesday meeting hadn’t been communicated to her nurses. Worse, because hospice was now calling the shots, some of the care we had discussed likely would not be done.

Meanwhile, Mama’s condition had continued to deteriorate. I insisted that the care plan we had established Wednesday be put into place.

By this Monday morning, my mother’s condition had improved remarkably. The nurse was even surprised — and admitted that the care plan was the reason. We revoked hospice.

My five sisters and I have no illusions about our mother’s longevity. We just want her to be comfortable in her last days. Had we not asserted ourselves — and been there every single day — I’ve little doubt that Mama would be gone by now. Getting end-of-life care for a loved one shouldn’t be this hard.

Not only is Mama still with us, but there’s one thing she hasn’t forgotten: how to sing. Monday she felt good enough to sing “The Lord’s Prayer,” hitting every note.