Essay: Discovering healthcare advocacy

Lessons learned in speaking up for loved one

By Leslie Pugmire Hole / The Bulletin

Published Aug 11, 2014 at 12:04AM

I can pinpoint the exact moment I became a squeaky wheel.

It was a couple of days after a late-night phone call notifying me that my mother was near death after short illness. I scrambled to arrange things at home: care for my three kids, a neighbor to watch the house and pets, plane reservations. By the time I arrived in Oregon she had been unceremoniously discharged and that very day had been installed in a nursing home for further recovery.

The home was easy to find, as it was next door to one of the marginal apartment complexes we had lived in during my childhood. I was given her room number and navigated the maze of shiny, white walls.

And there she was, the woman friends jokingly called “Auntie Mame” for her bold personality, husky voice and love of the outlandish. Slumped in a wheelchair, glassy-eyed and — I noticed when I kissed her forehead — burning with fever.

I instantly knew what had happened. Not willing to accept whatever paltry payment my mother’s HMO would fork out, the hospital had deemed her out of danger and therefore not in need of hospitalization. A bed was quickly found in an understaffed nursing home, where no one had noted her fever or lack of alertness.

This was a crossroads for me. A perennial people-pleaser who never liked to rock the boat, I would accept all manner of unwelcome outcomes rather than speak out for myself. I hated to push, to prod, to complain. Just the phrase “squeaky wheel” made me think of annoying, demanding, selfish people.

But here was my only parent, sick, uncared for and all alone save for me. She couldn’t speak out for herself, even if she’d wanted to. I sucked in a deep breath, squared my shoulders and headed out into the hall to request help.

That was the beginning, but it was far from the end.

Every step from that moment to the moment she died two years later was a lesson in health care advocacy. It was sometimes exhausting, irritating, enraging and nearly always frustrating. More than once I wondered, “Why does it have to be so hard?”

Living more than 500 miles away, I bedeviled her caretakers, doctors and insurance company by phone, fax and email. I made monthly and sometimes weekly trips to visit and attend doctor appointments. The word “no” became a challenge, not an absolute.

After I discovered my mother had been put in diapers, deemed too confused to use the toilet, I argued that a sincere effort had not been made to see if she could maintain bladder and bowel control because she was confined to a wheelchair and was dependent on others to take her to the bathroom.

It took me months to persuade them to try, and when her caretakers finally changed my mother’s toileting regime I was proved right — she was continent.

Not long after, she was finally determined to be ready for physical therapy only to be dismissed by the therapist as too confused to follow directions. I pushed for months after to get my mother another stab at physical therapy, knowing how much she hated the wheelchair.

Nearly a year later she returned to therapy, not because her doctor or caregivers thought she’d benefit but because — in my opinion — they were tired of listening to me. She did not make big strides in physical therapy, but she at least regained enough leg strength to periodically use a walker and, more importantly, it made her feel better emotionally.

And that was everything.

My biggest battle was prompted by a caring, diligent nurse at the home. My mother had complained about a sore spot in her arm weeks before but a visit to her doctor went nowhere, except to say there was a cyst on the inside of the forearm that was likely irritated by the wheelchair.

The nurse called me to suggest she thought the matter needed more attention. That was all I needed to hear to man the battle stations and head off to war. I made numerous phone calls and finally got my mother a new doctor. I drove all day to attend the appointment with her. Luckily, this doctor listened and gave the lump serious attention. Several tests later, we had a diagnosis — cancer — and a prognosis.

Even with radiation treatments my mother did not live long after the discovery of her cancer but she spent her last weeks in a wonderful hospice, one that I had to pursue doggedly to get her admitted to.

Despite the less-than-happy outcome of my introduction to health care advocacy, I would not change a thing. It helped me understand that speaking up for yourself, or someone dependent on you, is the only way to navigate the health care system. The world does not end when you challenge authority and ask questions.

In fact, the world opens up to you when you push a bit on closed doors. •

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Pulse Magazine Summer/Fall 2014

10:55 am | 08/14/14


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