Embattled

“At least we have good health insurance.”

That was the only thought that brought me any comfort in the early days of Dennis’ stay in the nursing home.

Adjusting from the constant care of the hospital to the greatly decreased attention of the new staff was disconcerting. For the most part, they were professionals who did their jobs well. But the circumstances were different. No one had the time to learn about the complexity of his diagnosis, much less tailor his care in any way other than routine.

The nurses made sure his feeding tube was working and a new bag of formula was attached to the IV pole every evening. Three times a day Dennis got a shot of Heparin directly in his stomach to avoid blood clots.

Nurse aides provided the rest of his personal care with varying degrees of concern. Because he couldn’t move, he had to be turned over every three hours. At that time they’d check his briefs and change him if needed.

There was a precise choreography to this task. It required two aides and a good deal of strength to roll him over so that the soiled brief and blue bed pads could be removed.

When clean ones were tucked under him, he was rolled back on top of the fresh diaper and the flaps were secured. Then the two aides each took two corners of the flat sheet and on the count of three lifted him and moved his body so that his head was at the top of bed.

There were several times that, within seconds of completing the rigorous chore, the sound of urine streaming or the roiling expulsion of gas was a signal that it had to be done all over again.

“Oh, I’m so sorry,” I’d say to the aides who groaned in frustration.

But the empathetic ones never expressed exasperation. “Don’t apologize,” they’d say. “It happens.” How I appreciated their grace in those harrowing moments.

I was told a doctor would visit once a week. I was looking forward to meeting him so we could discuss Dennis’ rare condition and I could get some sense of what to expect when my husband’s consciousness began to stir.

The first time the doctor came he barely crossed the threshold into the room. He gave the patient a quick look from several feet away and said everything seemed to be in order. He was not in the room for two minutes.

I followed him out to the hallway and asked for his card, which I was hastily given. I quickly realized he wasn’t the ally for which I was hoping.

Now that Dennis was no longer in the hospital, he wasn’t under the care of neurologists. I was on my own, with the help of a few good friends, in trying to understand what was happening in his brain.

There was very little in the medical literature. But I did find three articles that chronicled the cases of patients who were oxygen deprived because of carbon monoxide poisoning or drug overdose. They were all eventually revived and appeared to return to normal functioning for days or even weeks.

Then there was a rapid deterioration. Just like Dennis. What gave me hope was that with good long-term clinical therapy, some of the patients made meaningful recoveries.

I emailed the author of one of the articles, Dr. John Chen, to ask for advice. He responded promptly and compassionately. “It takes months or a year to recover,” he warned.

Emotional support such as talking, reading, and playing music to the nonresponsive patient was helpful, but the key was to make sure that active physical rehabilitation was maintained to prevent muscle atrophy and constrictions.

Two weeks after Dennis was admitted, the case manager at the nursing home told me there was good news. She said the insurance company approved him for another two weeks of care.

“Why is that good news? We’re covered for four months.”

“Oh no, no, no,” she responded. “You’re only covered if the insurance company okays it. If no progress is made, they don’t authorize continued treatment.”

I knew there was trouble ahead.

Soon I received a call from a woman who identified herself as our “patient advocate” at the insurance company. After some pleasantries about the need for me to take care of myself, she got to the point.

“We think your husband is ready for custodial care. He’ll be made comfortable—”

Before she could get out another word, I interrupted: “I know what custodial care means and you’re out of your ‘effing’ mind.”

What she was proposing was the end of all medical treatment for Dennis, such as the Heparin shots and the attempts by the Speech Therapist to coax a swallow reflex and the 20-minute weekday sessions with the Physical Therapist to manipulate his limbs.

Only non-skilled care would be provided. In other words, “custodial care” was a euphemism for “pulling the plug.”

“If you’re our advocate, I’d hate to meet our enemy,” I remarked.

As she started to tell me there was no change in Dennis’ condition since his admission to the nursing home, I asked her if she knew anything about Delayed Post-Hypoxic Leukoencephalopathy. She admitted that “in all my years working in medical care I’ve never heard of it.”

“Well, that is my husband’s diagnosis and it’s not something that people snap out of. I’m done with this discussion. From now on, talk to our lawyer.” And then I hung up. And then I burst into tears.

The last thing I needed was to go into battle with an insurance company. As if everything else wasn’t overwhelming enough.

Dennis’ best friend, Jim Jackson, also an attorney, intervened on our behalf. He put the insurance company on notice that if any rehabilitative therapy were withheld there would be some hell to pay. The issue of custodial care never came up again.

What happens, I wondered, to families who don’t have the wherewithal to engage in a bureaucratic brawl or the acquaintance with someone to whom attention must be paid?

As I think back on it, this was the experience that imbued me with a hell-bent determination to soldier on. This was the kick in the head that forced me to get up and keep taking punches.

Enduring pain was never a skill I aspired to master, but something in my psyche was triggered by a complete stranger’s honey-coated threat to end my husband’s life when there was still a chance I’d hear his laugh again. It was my suffering and no one was going to say “No Mas” until I was ready to say “No Mas.”