, 2014


Long-distance caregiving adds
to the challenges of Alzheimer’s

Fourth in a Series
by Lisa Hinton-Valdrighi

For the last couple of years, when Brenda Burtner of Kilmarnock received a call from her mother, Virginia Whitt, in Portsmouth, she inevitably knew there was a crisis.

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“Mom would only call me when she was in trouble or something was wrong,” said Burtner.

There was a lost purse, which her mother thought had been stolen. There was the time she forgot how to adjust the thermostat and flipped the furnace’s emergency switch, resulting in a pricey service call from a technician. There was also the time she got into a batch of poison ivy when she cleared brush from a backyard fence and didn’t recognize the nasty weed. And then there was the time she drove to a nearby store and forgot her way home.

For anyone familiar with Alzheimer’s disease and its related dementia, the stories are common.

Burtner, however, was dealing with crises from two hours away. She is an adult daughter who was trying to care long distance for a parent with dementia. Fortunately, her 83-year-old mother is now safely living with Burtner’s sister in North Carolina.

“The hard part is when you only get those phone calls when there’s a problem or when they think there’s a problem,” said Burtner, “and her concept of me being close by was off. She would think I was 15 minutes away, not two hours.

“Often the problem is not that bad,” added Burtner. “What you’re really hearing from them is ‘Will you sympathize with me because I’m having this problem’.”

Burtner is not alone.

For many adult sons and daughters living far away, there may be several months between visits to elderly parents. When a visit does occur, there’s often a stunning revelation, according to Frank McCarthy, who serves on the advisory board of the Northern Neck/Middle Peninsula Alzheimer’s Association (NN/MPAA). He also is the owner/director of Visiting Angels in Kilmarnock.

Lancaster and Northumberland counties are demographically the oldest counties in the state of Virginia, with one-third of the populations over the age of 65, said McCarthy.

“Our children don’t generally live here,” he said. “And when they do come, they find mom or dad may already be in trouble.”

The national Alzheimer’s Association is a resource no matter how far away an adult child, adult grandchild or sibling lives from a loved one with the disease, he said. Distance caring creates its own set of obstacles.

There’s constant worrying, said Burtner.

Training

“I’m a strong believer that most people cannot intuitively care for a spouse or parent with Alzheimer’s without education and training,” said McCarthy.

Adult children are grouped into two categories, he said. There are those who are completely in denial and then there are those educated about the disease. He works with both.

“Caring for someone with Alzheimer’s must be learned or taught,” said McCarthy. “There is an education process.”

The Alzheimer’s Association and Visiting Angels both recommend Jolene Brackey’s Creating Moments of Joy as a must-read book for caring and coping with dementia patients.

“This book helps people get ‘out of the box’ and think about what’s really important,” he said.

He relays a for-instance story about a gentleman at a convalescent facility who continuously crawled under his bed. Staffers said he needed to get out from under the bed. It was an inappropriate behavior. A niece finally told the staff her uncle had been an auto mechanic and that’s where he felt secure.

“Now, was that inappropriate behavior?” said McCarthy. “Not really. He wasn’t hurting anyone. That was the world, the time period, he was living in.”

And that is the mindset caregivers must have, he said.

Finding help

Visiting Angels provides non-medical home care services, which allows people to maintain a sense of independence in familiar surroundings at home. They run errands, prepare meals, offer assistance with hygiene and provide much-needed respite for family caregivers.

Burtner used Visiting Angels in Portsmouth to assist in her mother’s care. Mrs. Whitt started showing signs of the disease in 1999 but wasn’t diagnosed until three years ago by a general practitioner.

That’s when Burtner and her husband started making trips to Portsmouth every three weeks to check on her. Soon the trips were every two weeks.

“But I realized I couldn’t go that far just to get groceries for her,” said Burtner.

Visiting Angels started attending to her mother two days a week for a couple hours each day. But the Visiting Angels in Portsmouth recently closed, which helped to prompt Mrs. Whitt’s move to Charlotte to live temporarily with Burtner’s sister.

For adult children who may only be able to visit parents a couple times of year, the changes can be dramatic. Alzheimer’s symptoms aren’t always obvious over the phone, and “mom may be helping to hide dad’s dementia,” said McCarthy. “Very intelligent people can cover it up for a long time.”

What can’t be masked in person are the early warning signs of repeating things or changes in hygiene. The telltale sign is getting lost on a familiar route, a road that someone has taken hundreds of times, said McCarthy.

On one of Burtner’s visits, her mother was wearing stained clothing, something she normally never would have done. “That’s the type of thing when you see it, you know there’s trouble,” she said.

Along with organizations such as Visiting Angels and private duty nurses, distant relatives can also call on the help of many sheriff’s departments which offer services similar to Lancaster County’s Keep Safe program. In Lancaster, 911 dispatchers make daily calls to those needing someone to check on them. Calls are made at 7 a.m. or 7 p.m. or both, if needed. There are currently some 40 people on the list.

If the homebound person doesn’t answer the daily call, an officer is dispatched. In addition, dispatcher Aldreama McMillaen makes monthly visits to their homes.

Adding an elderly person to the call list may be made by the physician, caregiver, family member or the individual by calling the Lancaster County Sheriff’s Department.

Although the NN/MPAA doesn’t offer routine home visits, regional director Ellie Galloway will visit an individual upon a loved one’s request to assess if that person is in early stage Alzheimer’s.

McCarthy gained his experience first-hand, saying he did everything wrong at the beginning when caring for his mother with dementia.

“Education is the key,” he said. “This does not have to be as horrific as you think. If you educate yourself and we go in using our caregiving program, we can create some moments of joy.”


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