The decisions of dementia

The 85-year-old woman lives alone in her Virginia Beach home. The signs of dementia have been building for a while. She still drives but forgets, sometimes, where she parked. She cooks so infrequently, she has lost weight and become frail. On days she feels confused and disoriented - she calls it "being tired" - she knows to stay at home, which she is doing more.

She has become more isolated, but she's fiercely independent and adamant about staying put.

She lives safely alone for now, according to her daughter, but who knows for how long?

"I worry about every aspect of it," said the daughter, who lives in Norfolk and asked that their names not be used, to protect her mother's safety. "That she's lonely in the house. That she doesn't go out as much. I'm overwhelmed with worry."

This fretful monitoring of elderly parents, living alone and coping with the early stages of dementia, is a problem for a growing number of Americans, particularly baby boomers.

Their elderly parents are living longer, and can stay home longer because more home-based services are available. Women tend to outlive their spouses. But families don't live in the extended households common generations ago.

A forced move into a family member's home or an assisted living facility - many of which are expensive - may erode the spirit and independence of people whose memories are still mostly intact.

But there's also a point when they become unsafe.

They leave a pot on a stove too long, causing a fire. They forget their medicine, or take too much and land in the emergency room. They miss a bill payment or give away nest eggs to exploiters.

The challenge for relatives is keeping them safe and pinpointing the time for change.

The Alzheimer's Association Southeastern Virginia Chapter consults regularly with families in these situations.

Difficulties often start with paying bills or taking medicine. Often the older person will be aware something's not quite right and be able to compensate and even hide what's going on.

But the forgetfulness can eventually lead the person to become anxious and stay home more, increasing isolation, which studies show worsens the dementia.

"If there's less socialization, there's less stimulation to the brain," said Patricia Lacey, director of family services and education at the Alzheimer's Association. "If you don't use it, you lose it."

Some of the services that help tide them over are home-based housekeeping and companion services, which have grown during the past few years. Safety devices such as Lifeline, a medical alert system, and Project Lifesaver, which provides bracelets with sensors to help locate the people who wander from home, also are helpful.

Sometimes it's a matter of taking over bill paying, and buying kettles and irons with timers that automatically turn off. Selling or disabling the car. Making the home safer - by getting rid of throw rugs and installing grip bars - to lower the risk of falling when a parent gets confused.

Home-delivered meals can help ensure people are getting the nutrition they need and also provide regular contact. Adult day programs also can be helpful as dementia deepens.

Publicly funded services are in short supply, however, and demand is expected to swell in the face of the graying of America: People 85 and older are one of the fastest growing population groups, with numbers expected to triple by 2030.

Particularly difficult are situations in which relatives live in other states.

When Tom Sherrill's wife and brother-in-law lived in Hampton Roads, it made sense for his mother-in-law to move from Northern Virginia to Atlantic Shores retirement community in Virginia Beach eight years ago.

Within a couple of years, though, he and his wife moved to Greensboro, N.C., because of work, and his brother-in-law left for Maryland, leaving them to keep tabs long distance.

Everything went fine until last fall, when they began to notice something amiss. She'd fuss at them for not calling her more often, when they had been phoning every couple of days.

She also mentioned problems with taking her medicine, and Sherrill worried she wasn't keeping up with it. Fortunately, the retirement community had a service where staff would come twice a day to give her the medicine.

That worked for a while, but then she started saying they weren't coming, when in fact they had. She took a sum of money out of her bank account, ostensibly to buy more medicine, but Sherrill never figured out where the money went.

"Forgetfulness is one thing, but then they get upset and alarmed and imagine things are not going right," said Sherrill, who asked that his mother-in-law's name not be used, to protect her privacy.

A panic attack last fall landed her in the emergency room, and from there she transferred to the community's health-care unit. Last November the 79-year-old woman moved to the community's Harbourway unit, which serves people with dementia.

"It's tough when you have somebody who is at the point where most of the time she's lucid, and making comments like, 'I sure hope I don't have to move,' " Sherrill said. "It's hard to accept you might be ready for a more protected kind of environment."

In some cases, dementia can be treated and improved, such as when medication levels are wrong. But if it's a progressive disease, such as Alzheimer's, people eventually will lose the capacity to make judgments or recognize that something is wrong with them.

"In their minds, they're doing great, so why are these annoying children making stuff up about them?" said Kathleen O'Connor, a supervisor for senior services for the city of Virginia Beach.

In 2007, more than 50 percent of the 13,500 reports made to Adult Protective Services agencies in the state involved cases where the person wasn't able to care for himself or herself, a category called "self neglect."

Often, a family member must step in and make a decision. Getting power of attorney while the person is still competent to make such decisions is critical.

Another difficulty arises when family members can't care for an elderly relative, but the person doesn't have money to move into an assisted living facility, which is not covered by government insurance policies like Medicare and Medicaid.

There are state grants available to help people in that situation, but many facilities won't accept them, and you have to have a fairly low income to qualify.

It's often the death of a spouse or companion that spurs a change or a downward spiral of health.

Such was the case when the companion of Ruth Sparrow died a year and a half ago.

Her son, James Sparrow, helped her move into a townhouse, then an apartment, but he sensed she wasn't caring for herself as she should have been.

He worked for the federal government in Washington, D.C., and tried to keep tabs on her from afar. He requested a transfer from Washington to Norfolk in order to better care for his mother, who is now 76. That transfer was granted, which moved him closer in case of emergencies.

Gradually, he realized she was having trouble taking her medicine, keeping house and caring for her personal hygiene. He went with her on a doctor's appointment, and the doctor said she should move into an assisted living facility.

Ruth Sparrow was against the idea, however, and her son didn't want to force it. He and his sister didn't agree on a lot of issues, and no one had power of attorney of his mother.

Then one night in February, she fell in her apartment and fractured her wrist.

"Once she fell, it was time to invade her privacy," James Sparrow said. "I had to put my foot down."

He wanted her to move from her apartment into his Virginia Beach home. But in the hospital, a debate about the power of attorney arose. He and his sister both wanted it. Social workers got involved, and he eventually obtained it.

He has since moved his mother in with him and his wife and has been able to qualify her for the state-federal insurance Medicaid, which enabled her to enroll in the Sentara Senior Community Care center in Virginia Beach.

There, she receives meals and health check-ups during the day Mondays through Fridays, along with social activities.

At first, James Sparrow said, he didn't talk with others about his struggle to care for his mother.

But once he opened up to friends and co-workers about it, he was surprised how many others were experiencing the same themes with their own parents:

The constant phone calls. The family fights. The legal and financial conundrums. The angst - and delay -

over filing for power of attorney.

"We avoid these things, but after she fell, that woke me up. I didn't want to accept that she couldn't live on her own, but I had to realize she couldn't do it any more."

Elizabeth Simpson, (757) 446-2635, elizabeth.simpson@pilotonline.com Story jumps herey