Like many people, Don Pilcher learned the importance of advance planning the hard way.

Don and his wife, Linda, cared for Linda’s mother — chief of nursing for the state of Illinois — for 13 years as her Alzheimer’s disease progressed. Despite her career in healthcare, she had not prepared an advance directive, so determining  what she may have wanted toward the end was difficult.

“We were deeply informed by that experience,” says Don, “And it served as the impetus for my wife drafting her own, very explicit, healthcare directive. Feeling the absence of her mother’s advance directive, she was not going to allow her own wishes to remain unknown.”

When Linda began showing symptoms of Alzheimer’s herself, she and Don pursued every available resource, strategy and treatment to best navigate the course ahead. They both retired and spent the next seven years putting all aspects of their lives in order: legal, medical, family relationships — including advance directives and wills — and even the draft of an obituary. 

Five years into her diagnosis, Linda’s needs became such that Don could no longer sufficiently care for her at home, and together they chose a residential facility. “I visited daily, often several times a day, and continued to give her some direct care,”  says Don.” I did all of her personal laundry. I valued the connection of taking care of her. She didn’t know me in the end, but she clearly liked me. Sometimes I was her dad, sometimes I was her brother, but I wasn’t her husband, Don. She would ask, ‘Where is Don?’ I’ve been around enough dementia that this wasn’t frightening nor threatening to me.”

The explicit advance directive Linda had written many years before, as her mother struggled with Alzheimer’s, offered the most helpful guidance in her end-of-life care. She indicated that in the case of dementia, she wanted palliative care only: no antibiotics, no labs, no emergency room, no CPR, no assisted feeding; nothing but palliative care or hospice.

“I was always glad to have the directive, but when I invoked its use, its true power became clear,” says Don. “It wasn’t just a legal document. It was the narrative power of the letter with her signature. It carried huge emotional weight and had a stunning impact on the medical professionals taking care of her. Every nurse, doctor, visitor and family member read and heard her decisive voice.”

On Christmas Eve of 2019, Linda suffered a fall, sustaining injuries severe enough to qualify her for hospice. Her explicitly outlined end-of-life wishes, which Don had enlarged to poster size and hung by her bed, influenced her hospice doctor to provide care that was aligned with her preferences. She was placed on palliative sedation. A week later, on New Year’s Eve, she died peacefully.

“‘Tell me how you want to die, and we’ll work back.’ The advice we received from a nurse early on was key in navigating the decisions we later faced,” recalls Don. “It was an elegant introduction to how serious dementia is, and it is my deepest recommendation for those at the beginning of the journey.”

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