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Long Distance Caregiving

If it is tough to manage your family, job, personal life while caring for your nearby elderly parent, imagine doing it from 1,500 miles away!

Let's look at two actual "long distance" caregivers with very different, yet positive outcomes:

Joan B, 71, lives in Monmouth County, while caring for her 88 year old Aunt Grace "long distance" in Florida, and also supporting her 45 yr old daughter here who is finishing chemo and radiation, post breast surgery. She also supports three elderly, isolated widows in her neighborhood, bringing them hot meals, taking them shopping, etc.

For eight years Joan served as one of two long distance caregivers for Grace, whose apparent Alzheimer's and physical illnesses progressed slowly. She also had a series of falls.

"It is impossible to do this from 1,500 miles away—really difficult," Joan said.

"After weeks or months of poor communication and misunderstandings, we would fly down, work on her finances, medication, evaluate assisted living places, put her house up for sale, but then back here we were unable to keep an eye on her. Her nearby drug-addicted son was causing serious problems for her, mis-medicating her, stealing her money. We had no one to turn to down there. When she was alleging abuse from her son, we couldn't observe it, couldn't confirm it and report it to the police reliably," Joan explained.

Eventually, family got the court involved through protective services which led to guardianship, placement in a "mid-range" assisted living facility, correct medication management, proper diet, rest, mental stimulation. Grace is thriving.

"She talks coherently by phone, better than she has in years and we know she is safe. That is a great relief," Joan said. Success!

Would having a professional, objective geriatric care manager involved on the scene prevented some of the difficulties Grace faced? "Absolutely," Joan said. "We did it the hard way."

You can locate out of state professional, licensed care managers at www.caremanager.org. Local Offices on Aging and protective services and social service departments can also guide you to local resources. Volunteers might visit regularly, for example, to allay your fears.

A more representative Florida situation: Janet, 86, lived alone with progressing Alzheimer's after her husband of 60 years died. They had agreed she would never have to leave her condo on the water. She resisted family efforts to move her back to New Jersey. Finally, her daughter, who had two "college commuters" still living at home and a sister fighting terminal cancer in New York, brought her mother back here. She had researched assisted living and medical day programs, knowing Mom couldn't stay for long in her converted dining room.

After showing great confusion and "shock" the first day back, her mother adjusted so well after a few months that she now serves as a friend and "facilitator" for others who make this reverse migration. Her memory continues to deteriorate but her communication and understanding have actually improved significantly.

"We never could have done this in Florida," her daughter says. "Here we have all the support imaginable at the day program which is part of the assisted living and can visit her several days a week, bring her home for meals. I still go to the support group at the day center. " With little help in Florida, both of these families navigated themselves, with different successful residential transitions. After rejecting "live in" services, both families evaluated assisted living communities, using assessment tools which prepared them to ask the same questions, observe the same things at each facility. One such tool is available from the Assisted Living Federation of America. (The many nursing home evaluation tools on the Internet work just as well.)

Some of the factors the families considered, in evaluating the assisted living sites: location; food; nursing/care staff, hours, staff ratios; access to medical and other professional care; all fees; management and corporate structure; diversity of the residents, religious services, activities, facilities, input from residents, families and staff they met; results of recent state surveys, etc.

An "excellent" assisted living transition—or other housing/care solution--removes a tremendous amount of stress from caregivers. A bad one only increases it, prolongs it, and can lead to multiple difficult transitions. Using the evaluation tools and making the assessment visits increase the chance for success.

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