Many years ago, when my father was working his way through psychiatric diagnoses, my mother-in-law, whom I’ll call “J,” said, “If I ever get like that, take me out back and shoot me.”
She was kidding, of course, but not really. And now the time has come when she’s no longer making fully rational decisions. Yet the situation is confusing.
“J” is 86 years old. She was a 2-pack-a-day smoker, since her mid-twenties, until a mild heart attack scared her a few years ago and she finally quit. But the damage had been done. COPD. Heart failure. Spinal stenosis. Atherosclerosis. Peripheral vascular disease. Hypertension. Most of the conditions are controllable with meds, and when asked at medical exams about her illnesses, she claims not to have any. About a year ago she started oxygen supplementation at night. Soon she was reading again, aware of the news, and the repetitions of the stories about how bratty my husband was as a boy noticeably declined.
Now she needs oxygen 24/7. I’d been saying this for many months, being the person who schleps her to most medical appointments. I’d have to ask the cardiologist to check her oxygen saturation – he a competent doc and seemingly nice man who nonetheless harbors an ill-disguised attitude that someone with 2 X chromosomes (me) couldn’t possibly know anything. Her pulse ox would be ok after taking a few steps in the hallway after having sat in the waiting room for 30 minutes. But lately I’ve noticed she can’t go 4 steps without becoming completely winded.
In recent weeks, as the exhaustion and muscle pain worsened, I tried contacting her primary care physician several times, and was ignored. I had to actually go to the doctor’s office to read the echocardiogram myself because the nurse could not interpret it. Well, last week, the PCP finally examined J at the assisted living facility and called me, alarmed. She related everything I’d been trying to tell her for years.
J has selective hearing in a medical setting. She goes to a doctor’s appointment with a set phrase – “I’m in good health,” for example – and manipulates the conversation until the doc utters something that seems to agree. At her first appointment with a nephrologist about 18 months ago, however, the young doctor would not be cowed. He explained half a dozen ways that she was in kidney failure. But back at assisted living, she announced to the gang, “The doc gave me a clean bill of health!”
And so a few days ago, after the PCP’s found a pulse ox of 88 and ordered assisted bathing at least thrice weekly (I’ll get to that in a minute), we stopped in for a visit. When my husband brought up the oxygen issue, J went crazy.
“They decided it was a mistake, I don’t need it.”
Who is ‘they?’
I doubted that the nurse at the assisted living facility was going to counter a doctor’s order for oxygen. But that’s the least of the problems.
J may die of being dirty.
When the choking haze of cigarette smoke receded in the aftermath of the heart attack that forced the quitting, when J was still living alone, a distinctive odor emerged. She wasn’t washing. Or wiping. Today her unit at the assisted living facility smells like a large mammal died and decayed in her living room. Recurrent fungal infections ravage the folds of flesh that she can’t reach. People have commented on the pervasive smell since she arrived two years ago, but nothing was ever done, I think because she is in financial control. Last week the PCP, after instructing us to insist on assisted bathing since we pay the bills, was shocked to learn this was not the case.
If J does not go on constant supplemental oxygen and get herself cleaned up on a regular basis to control the fungal and other infections, the PCP told me, she wouldn’t last a year. She didn’t mean last a year until she was moved to a nursing home. She meant last a year, period.
Like the healthy kidney conclusion, J denies both problems. Her inability to smell her own stink is yet another consequence of long-term smoking, her respiratory cilia having long since vanished. And the lack of oxygen may be impairing her thinking. If J is refusing the round-the-clock oxygen, she will certainly refuse someone cleaning the extended microbiome from her various nooks and crannies on a regular basis, which she will have to pay for.
So what do we do?
When my father was close to death from paranoid depression, my sister and I, not being truly informed, refused electroconvulsive treatment. An ethics committee at the medical center intervened and overruled us – and it gave him two more years. Can a PCP do the insisting for us in the present situation?
I’d support J’s decision to forego something horribly invasive or painful – chemo, coronary bypass, or dialysis. But supplemental oxygen and bathing? I understand that these interventions represent a loss of control, and perhaps an acknowledgment that she has been in deep denial of medical matters. But if we do not, somehow, insist, in an attempt to honor her autonomy, she may die of too much dirt and too little oxygen.
This post was written by an anonymous contributor to PatientPOV.org.