Long-distance caregiving presents special challenges

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As the overall population has aged, long-distance caregiving for seniors has grown, as well.

But making the situation all the more difficult is when a parent or other family member with dementia has to transition out of the home. What happens if that person’s family lives far away, and is unable to oversee the care?

Lynn Peel, the president of Beach Glass Transitions in Scarborough, a regional resource for families in need of transitioning a parent or family member to senior care, says long-distance caregiving is all about building a support system that you trust.

Beach Glass Transitions helps families living away to coordinate care for a family member, and can also assist in moving a family member from a distance to be closer.

Peel said dementia and Alzheimer’s “definitely complicate” caregiving, both from near and far.

“When someone has dementia, they really need 24 hours of care,” she said, adding that most often, families struggle with the timing of seeking help in either transitioning or other care. “A lot of times, there is no perfect time, and people sort of wait until a crisis hits before they get involved.”

She said when a family is monitoring a parent from nearby, it’s quite a bit easier than if they live a distance apart. Only talking on the phone with a parent for 10 minutes a day, she said, might give a false sense of how things are going.

Peel created Beach Glass Transitions in 2008 with the goal of providing families with a point of contact and a trusted senior care adviser to guide them through the major transition. The organization also works with local businesses and gives seminars on caregiving – many of which focus on long-distance issues.

She said some businesses they work with have a large majority of employees who aren’t originally from there, meaning their families are from away, in places like Florida.

“The hardest struggle is when it’s someone with dementia,” she said.

Lea Rust, the marketing director at Avita of Stroudwater, a memory-care unit in Westbrook, said for families living as close as Massachusetts, it is still long distance to have a loved one in Maine.

“To try to care for that parent who is only even six towns away can still be long distance,” she said. “It’s difficult.”

According to Ken Capron, the founder of Memory Works, a statewide resource for dementia care, long-distance caregiving is a “really hard reality for most people.”

“Do you bring your parents to you, or do you move back to take care of your parents?” he said.

Capron said some of the difficulties associated can involve the family dynamic itself, including the handling of finances, and splitting up visitations between siblings.

“All of the issues that exist in a family are just magnified,” he said.

This week, Peel was working with one family with siblings who live in other states, and a father who lives in a memory-care unit in Maine. She said due to behavioral issues, the father had to be moved to a hospital, causing a difficult communication situation among family members.

Beach Glass attempts to help families with the often-overlooked logistical aspects of caregiving, such as getting finances, benefits and insurance lined up. She said the small things can sometimes take a toll on family caregivers, especially from afar.

“Emotionally, it makes a big difference,” she said, referring to a recent case where a client was in crisis mode with a parent who needed to be placed in memory care as soon as possible. She said when she asked for the parent’s primary care physician, the client panicked because the information wasn’t known.

“The sense that you have all that information makes the whole process go a lot smoother,” she said.

The most important piece, however, is the social piece, Peel said. When a person with dementia or Alzheimer’s arrives at a memory-care unit, with all-new people and daily routine, it can be overwhelming.

“What made their parent happy before they had dementia?” she said. “Sometimes it’s things that you wouldn’t believe that can enhance the person’s quality of life.”

Peel gave an example of a woman who recently moved into a memory-care facility who found that she enjoyed opening mail on a daily basis, meaning caregivers made it a point to set up a system for the family to consistently send letters.

After a transition, Beach Glass keeps tabs on the person living in memory care, providing another voice in updating the family on how things are going.

“We’re able to communicate to the family as a third party,” she said, as an added oversight to the process, which can be a relief to family members living far away.

Peel gave a recent example of a client who lives in California whose mother is in a local memory-care facility. Peel said the mother was telling her son that there was nothing to do at the facility, but when Beach Glass went to observe her, she was busy with activities all day.

“He was devastated, and ready to move her out,” Peel said, adding that sometimes the added oversight can clear up what’s actually occurring. “It was a relief.”

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