For former hospice nurse, dementia is worse than death

Barbara Bitros has a lovely life. She lives in a beautiful restored barn in Langhorne, dates a kind man, sees her grandchildren twice a week.

She woke up on a recent Monday and found her frying pan in her refrigerator. She has no idea when or why she put it there.

Bitros, 64, is a former hospice nurse and educator who has seen many people with dementia die.

She was so concerned about her own memory losses - entire blocks of time vanished, what she called intermittent amnesia - that she had herself tested by three neurologists: brain scans, a spinal tap, the full workup.

The diagnosis is mild cognitive impairment, though one neurologist told her it could be early-onset Alzheimer's.

One lab test said she was "within a borderline zone between diagnostic categories." Gabriel Tatarian, a neurologist with Thomas Jefferson University Hospital, wrote in April: "It is possible this is early Alzheimer's disease, and she does report a rather rapid progression."

What is certain is this: Bitros says she will end her life before she loses her sense of self.

She fears dementia far more than death.

"I don't plan on going into a facility," she says. "If I get to the point where I can't take care of myself, it's time."

Sitting at her kitchen table, snow falling gently outside her window, tea kettle on, she won't be specific. All she will say is that she has "made arrangements."

She has friends, nurses, who will tell her when they think she's slipping away, when she still has the ability to end her own life herself.

"I know that they love me enough and are courageous enough to honor my wishes," she said.

"I fear the long, painful, humiliating process where you don't know who you are or who anybody else is. Nobody should ever die like that."

She wants no part of it.

"I want my grandchildren to remember me as a warm and loving person who's still capable of reading them books and making them dinner.

"My goal is to have a peaceful death."

Bitros has tried to provide care and comfort for people at the end. A dozen years ago, she started an "abider" program for Life Choice Hospice in Dresher, encouraging volunteers to sit in nursing homes with dying people who were all alone.

She had been doing this herself until recently.

She also until recently was teaching end-of-life care to nursing assistants working for a geriatric-care planning and home-health agency, Complete Care Strategies, based in King of Prussia.

"She was magnificent," said Beverly Bernstein Joie, the president, who has worked with Bitros for many years.

Bitros knows that the subject is controversial and that readers will wonder why she is making her views and plans public. She simply wants people to know there is another way. Her son, who is close to his mother, declined to be interviewed. "I've decided not to discuss the issue," he texted.

She calls Brittany Maynard "my hero." Maynard, a young Californian with brain cancer, moved to Oregon last summer so she could end her life under Oregon's Death With Dignity Act. On Nov. 1, Maynard took a legally prescribed fatal dose of medicine and died.

But only terminally ill people who are mentally competent can take advantage of the Oregon law, Bitros said.

That law uses the hospice criterion of six months or less to live, but "it wouldn't help me," she says.

When people with dementia have six months to live, they are long past being mentally competent.

 "I would be deemed appropriate when I'm bedbound, incontinent of bowel and bladder, have had multiple infections and bedsores, can speak only six words, and cannot recognize my family or friends," she says. "Then I would meet the hospice criteria of having a prognosis of six months or less." 

The specifics of Bitros' situation "may be unusual" - a former hospice nurse planning to end her own life before dementia robs her of her identity - "but the general reaction isn't," said David Casarett, director of hospice and palliative care for Penn Medicine.

"Most of my patients are terrified of a future in which they're cognitively impaired and have lost their dignity," he said.

"There is a lot that good care can do: safe, pleasant surroundings, careful attention to cleanliness and hygiene, and of course good symptom management," he added. "Those should be a bare minimum for all patients.

"But most patients with advanced dementia spend their last year of life in a nursing home, and some homes are better than others. Also, that only gets you so far.

"Good nursing care and hospice can help to alleviate some consequences of that decline," he said, "but can't prevent it."

 The Alzheimer's Association issued a report two weeks ago saying more than five million people are living with Alzheimer's, expected to increase to 13.5 million by 2050. The current cost of care for people with Alzheimer's and other dementias is $226 billion a year.

The report, "Changing the Trajectory of Alzheimer's Disease: How a Treatment by 2025 Saves Lives and Dollars," says that increasing research and delaying onset by five years could cut the number who get it in half. 

In her kitchen, Bitros appears together, happy, peaceful, with pictures by grandchildren hanging on the walls. It may not be easy for others to see, she says, but the deterioration of her mind is there, and progressing. She gets lost on familiar roads. She repeats questions. She makes lots of lists to help her remember.

"I haven't seen very much, to be honest," said her boyfriend of two years, Keith Pacheco, 65. "For me, it's been pretty normal. A few things here or there that she's forgotten. But I forget a few things here or there, too. It really doesn't seem out of the ordinary to me."

But he read her journal.

"She's a lovely person," he said. "If things go as expected, I'm going to lose her sooner rather than later."

Maybe much later.

Maybe decades.

But definitely not this day.

She was taking her grandchildren to the library.