A Tender Task: Deciding A Future In The Shadow Of Alzheimer's - Hartford Courant

Sharon Ann Scully, 57, of West Hartford, Conn. got a tattoo with her children's names after she developed Alzheimer's three years ago.

The first signs of Sharon Scully's disease showed up when, as an assistant attorney general, she was working on a grueling case against a Milford gas station accused of leaking pollutants into Long Island Sound. She had episodes of forgetfulness, like losing her glasses. She chalked it up to exhaustion.

There were more serious signs. She sat crying in her icy driveway for 15 minutes one day because she couldn't remember how to release the emergency brake. She repeated herself so many times another day that her husband snapped at her. “He never snapped at me,” she said.

At work one day, the exhibits that she meticulously put together for a case suddenly seemed like foreign objects to her; she didn't know what to do with them.

Her supervisors put her on light duty, but she still found herself easily distracted. That wasn't like her. “I was the most focused lawyer in that freaking office,” Scully said.

Her co-workers urged her to get help.

“They told me, ‘We know who you were. We don't know who you are now,'“ Scully said.

She was only 55, so Alzheimer's disease or age-related dementia didn't occur to her at first. Adrenal fatigue, menopause and attention deficit disorder were considered, then ruled out. It was Alzheimer's.

The Alzheimer's diagnosis means a lot of plans will have to be made, some financial, some emotional. Living arrangements have to be figured out.

Some preparations are more important than others. Sitting at the dining room table of her West Hartford apartment, Scully lifts her right arm to show a tattoo above her wrist. There, with the symbol of the Trinity, are the three names of her children: Brianna, Dylan and stepson Scott.

“I put their names on there because I'm scared that I'll forget their names,” she said. “I want it in front of me, where I can see it all the time.”

Uncertain Future

Scully understands the implications of her diagnosis. Preparing for the very uncertain future that comes with Alzheimer's demands special attention on many fronts on the part of many people: the patient, spouses, children, friends, caregivers, doctors. There are personal and emotional tolls. And financial ones.

According to a study published this year in the New England Journal of Medicine, total health care costs for Alzheimer's disease in the U.S. were as high as $215 billion in 2010 — higher than the costs associated with either cancer or heart disease. The researchers, from the RAND Corp., predict that the costs associated with Alzheimer's will more than double in 30 years. Most of the costs cited by RAND don't go toward medical services; 75 percent to 84 percent of the money is spent on long-term care, whether in the patient's home or in an institution.

Scully, now 57, is young for Alzheimer's — the average age of diagnosis is 70. But before long, better tests and more sophisticated technology are expected to make earlier detection more common.

“That [diagnosis] will start shifting earlier and earlier with all the excellent information coming and with baby boomers who will want to know earlier,” said Dr. Karen Blank, who practices geriatric psychiatry at Hartford Hospital. Memory lapses that were once brushed off as “senior moments,” Blank said, now lead many middle-aged people to see their doctor.

Earlier diagnoses might give patients and their families more time to plan for the future, but not necessarily the skills to do so. When and how do you tell your loved one, who may already be exhibiting symptoms, that he or she has Alzheimer's? How do you spend the remaining time? What kind of living arrangements need to be made? And how do you pay for it all?

Jay Kearns, an elder law attorney in West Hartford, said he has seen too many families afflicted by Alzheimer's drag their feet when it comes to planning, often with the hope that things will get better or at least stabilize. But, Kearns said, Alzheimer's is a progressive disease — things don't get better.

“I have this concept about families as people age, I call it the silent dance, where people kind of tap dance around issues that surround death, dying and disability,” he said. “When folks become forgetful or feeble-minded, there's a reluctance on the family's part to have meaningful conversations.”

The numbers show an increasing need for those conversations. According to the RAND study, about 4 million people in the U.S. over age 70, or about 15 percent of that age group, had Alzheimer's; by 2040, that number is expected to more than double. (The national Alzheimer's Association estimates the total number of American who now have the disease at 5.2 million.)