Archive for Caregivers

In Hospice, Don’t Be Ruled by the Rules

During a patient care team meeting, the hospice medical director explained that he’d broken one of his rules.

My distant impression of the doctor—physically distant because of where he and I sit in the meetings and professionally distant since he cares for the patients in their dying while I support grieving families after death—is that rules are critical values for the way he lives his life.

However, the soft-spoken physician felt he had to break a rule. Instead of providing key information about the disease process, and the options for comfort care so the patient could make choices about the next steps, the doctor bluntly told a patient that he must be transferred from his residence to our in-patient hospice home. Now! There, the patient would have a better level of care for his needs. Moving was not his choice; it was the doctor’s demand.

The patient died before the next sunrise. He died with the sole member of his local family at bedside. For weeks, his dying had been lonely, problematic, and anguished. In his last hours, dying became peaceful. The doctor had used good judgment. But the doctor had also wrestled over “breaking” a personal, essential rule: whenever possible, let a patient take the lead in making an informed decision. Read More →

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Did Dad’s Dying Kill Mom?

“Dad is going to kill Mom.”

My older sister made that blunt statement on several occasions. I recall, in the way siblings react as the years of a family become decades, that I mostly ignored her. Maybe once or twice I muttered a reply, a weak disagreement. Why argue who’s right or who’s wrong when we were all, each in our own way, struggling to make sense of a senseless experience?

Our father’s slip-slide into dementia had put a huge burden of caregiving onto our mother. Though her situation (slightly) improved when he was placed in a memory care facility, the emotional, spiritual, financial, and physical costs to Mom were relentless.

She took her wedding vow seriously: for better, for worse; in sickness and health.

Was Dad “killing” her? Was she unfairly wearing out because of the commitment to help her sick, aging, stubborn—and yes, beloved—husband?

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When Mom and Dad were younger, they had a plan for the so-called golden years: live in the house they’d lovingly built into a home until both died in their sleep and then be quietly buried in cemetery plots purchased (and paid off) in the mid-1960s.

Except there was a decade’s difference in their ages. That didn’t matter much when they were raising their kids. It did when Dad could count more than eighty candles on his birthday cake. Read More →

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I Don’t Know

I-Dont-KnowOn the weekly list of hospice patients and their myriad illnesses, one disease seemed to stare back at me . . . Idiopathic pulmonary fibrosis.

What was it? I’d never heard or read about this illness.

Later, I scoured the Internet and found this description from the Cleveland Clinic’s website:

The cause of IPF is unknown. In some patients the disease is genetic (you inherited the disease from your parents). Environmental factors (particularly exposure to certain types of dusts) may also play a role. What is known is that IPF changes the lung’s ability to function normally. Typically, mild scarring of the lung tissue occurs first, but over months to years, the normal lung tissue is replaced by more heavily scarred lung tissue, which makes it difficult to breathe and deliver needed oxygen to the body. Read More →

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