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Waiting in the dark with Dad

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In the first decade of the 1900s, a Spanish couple boarded a ship in Malaga and sailed to Hawaii to work in the sugar cane fields. They later continued to California, opened a small grocery store an hour east of San Francisco and raised six children, the youngest of whom is my father.

My grandparents died before I was born, and my aunts and uncles are gone now, too. All that's left of that family is my dad, who is 83 and has spent the last few weeks in a nursing home on the Oakland side of the bay.

My father, who can barely walk because the cartilage in his knees is worn down, took a fall late one night while trying to get to the bathroom in the dark. He couldn't get up, and my mother, who has her own health problems, couldn't lift him.

They've stuck together for more than 60 years, with plenty of ups and downs, and it doesn't seem fair that now, when they most need a break, life only gets harder. After my mom determined that my dad was OK, she got a blanket, settled down on the floor next to him, covered the two of them up, and they tried to sleep.

I'll hold that image for years, the sweetly tragic picture of my mother and father together on the floor, waiting out the dark.

The next morning, my dad was taken to the emergency room by ambulance along a route that has become all too routine after quadruple bypass surgery and several mini-strokes. They transferred him to the nursing home, where he's tired and angry and doesn't want to eat. He can tease you with a familiar twinkle and a pithy comment, but just when you think the man you knew is coming back, he's a stranger again.

And so it goes, the slow, inexorable march to the place we all must visit. Watching, I find myself wondering why we're so ill-equipped to accommodate, accept and talk about the fate we all are guaranteed.

We're not very good at dying, or even aging. We dye our hair unnatural colors, pin back our faces and pretend nobody knows. We've got an obsession with youth and a phobia about death.

A lopsided percentage of American healthcare costs go toward meds and medical procedures to keep hearts beating in terminally ill people 65 and older, people who often have little or no quality of life. Wouldn't it make more sense to shift some of that funding into palliative care programs that allow people to live out their time with dignity, and medical support, in their own homes rather than in hospitals or nursing facilities?

My parents, like so many before them, may end up blowing their life savings on prescriptions, IVs and care that will only prolong the suffering.

When I went to visit my father in the nursing home, it seemed like a clean, well-managed facility with caring staff. But it's not a place to live in so much as a place in which to be kept alive, and my father wanted to get the H out of there.

"We better get going," he said to me. "Mom has probably fixed dinner for us."

My mother and sister do the exhausting work of standing vigil. The waiting, wondering and visiting constitute the rhythm of their days. Monday and Tuesday may bring signs of hope, and then Wednesday breaks their hearts.

My sister, whose ovarian cancer spread to her brain several years ago, sets her own issues aside to dig through the fine print in the Medicare and supplemental health insurance contracts.

Does my dad need a nursing home that specializes in dementia? If so, would the current nursing home really be inclined to make that recommendation and lose the business because of it?

If he were brought home, what nursing visits would be covered and for how long?

Is it too soon to try to get hospice care, which is covered by Medicare but only if a doctor says the patient has six months or less to live?

How does a doctor know?

And why does this all have to be so complicated?

I tell people I don't want to live this way when I grow old. I would hate to be a burden on the people I love. But does everyone say that at 57 and then sing a different song at 83?

I tell myself death can be a blessing, but is that the selfish thinking of someone who can handle the liberating finality of death but can't handle the inconvenient business of dying?

I find myself reading about euthanasia in European countries and wishing California had Oregon's Death With Dignity Act, though not for my dad. That wouldn't be his way. Even now, he's a fighter, a scrapper, and stubborn, too.

In his youth, he was a feisty athlete who played every sport in high school and then married the cheerleader who would lie at his side 60 years later when he fell in the night. He drove a milk truck and a bread truck when I was a kid, and he saved pocket change at the end of each day to pay for the annual one-week family vacation in Santa Cruz.

There were good times, lots of laughs, plenty of love and devotion to family.

I don't know how long Tony Lopez has to live, but I know these next months are likely to get even harder. And I hope he can take comfort in knowing that his family is with him, waiting out the dark.

steve.lopez@latimes.com

Copyright © 2014, Los Angeles Times
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