The Geography of Families and the Art of Long-Distance Caregiving

Photo of an adult son caring about his mother

Who is a long-distance caregiver? According to the National Institute on Aging(NIA), a long-distance caregiver is anyone, anywhere, no matter your gender, income, age, social status, or employment, living an hour’s drive or more away from a person who needs your help.

Many fall into this category. Take Tom, for example—one of six siblings and the only one living in Washington state. Tom lives in Olympia, a 75-minute drive—in good traffic—to his mother’s home (his childhood home) in Seattle. It’s a challenging situation—Tom is married, has three kids, and travels extensively for work. His siblings, who live across the U.S. and internationally, have similarly busy and complicated lives. Tom’s visits to Seattle are sporadic and not as frequent as he’d like.

When their mom, Peggy, started to exhibit memory lapses and uncharacteristic behavior following the death of their dad the previous year, they became concerned. The memory issues became noticeable when things she previously took pride in began to slip. Birthdays and anniversaries were missed—something that Peggy particularly enjoyed—as well as her personal hygiene and home maintenance.

These concerns prompted the siblings to exchange e-mails and phone calls and begin an honest dialogue about how best to support their mom and respect her independence while also looking out for her safety and well-being.

Where do you start?
Unsure what to do next, Tom contacted a friend who had gone through similar experiences with his own mom. Friends can often be a great place to determine where best to start and learn of potential pitfalls to avoid. They may also offer recommendations on resources, supports, and services.

Elder law and estate planning
Fortunately, Peggy and her husband prepared for their later years by working with an elder law attorney. The attorney helped them complete essential, general estate planning documents:

  • A will
  • Advanced health care directive (for physicians)
  • Durable Power of Attorney—Finances
  • Durable Power of Attorney—Health care

Tom’s brother in Denver, an accountant, is Peggy’s attorney-in-fact (AIF) for finances. He helps their mom manage her bills and oversees her investments. Tom is the AIF for health care. Although it was difficult, Tom shared his concerns with his mom about the changes he and his siblings noticed and encouraged her to see her doctor for a check-up.

Patience and persistence pay off
Peggy was resistant at first but with some patience, persistence, and loving family support, she agreed to a check-up and eventually acknowledged some of her own concerns. The upkeep of the house was overwhelming, and she often felt lonely and even isolated after the death of her husband. Peggy wasn’t confident with her driving and limited outings to the grocery store a few blocks from her house and to church on Sundays when the weather was favorable.

Tom arranged his work schedule so he could accompany Peggy to the doctor. It had been a couple years since Peggy’s geriatrician had seen her, so she did a thorough physical exam. The physician also conducted a basic evaluation of Peggy’s cognitive health.

Dr. Leslie Kernisan, a geriatrician who launched an informative website entitled Better Health While Aging, reviews how doctors diagnose dementia in this helpful blog post, “How We Diagnose Dementia: The Practical Basics to Know

Peggy’s exam provided enough evidence of cognitive impairment for her geriatrician to diagnose her with “probable Alzheimer’s disease, in the early stage.” Out of concern, the family documented their observations in writing and shared anecdotes with one another. This was helpful to the doctor in making her diagnosis, as she was able to see uncharacteristic patterns over an extended period.

What next?
Given the diagnosis, many decisions had to be made. Peggy was in the early stages of Alzheimer’s, but her family acknowledged that it is progressive. They knew that eventual changes in Peggy’s health required thoughtful planning and looking at options. Tom and his siblings wanted to ensure that their mom was involved in planning and that they honored her preferences when possible.

Tom and his siblings took a positive step by connecting with local community resources and service options. The portal through which Seattle-King County residents can connect “with the right kind of help, when and where you need it” is Community Living Connections (1-844-348-5464 toll-free). Services are professional and confidential, and many are free of charge, a public service funded and coordinated by Aging and Disability Services.

A similar public service of the U.S. Administration on Aging called the Eldercare Locator (1-800-677-1116) is an efficient way to locate services and resources for a parent or other older loved one who lives further away.

What else can you do?
Identifying and connecting with resources, services and supports is important and essential, and so are the following considerations:

  • Keep records and relevant information up to date and accessible.Make sure that you have the most current health care and contact information handy and quickly available, including numbers for neighbors, care providers, and pharmacies. Also, keep financial and legal information pertaining to your parent/s in a safe, yet easy to retrieve place. Here are some  NIA tips on organizing paperwork.
  • Reassess needs with each visit. Even though you may be working with professionals who are involved in the care of your loved one, it’s essential that you plan to assess your parent’s situation with each visit, even if your parent lives in a residential care community. Needs change and so do care options.
  • Communicate, communicate, communicate. This is at the heart of everything. Phone calls, e-mails, cards, and letters can all go a long way. With today’s technology, smartphone and computer apps can also be fun as well as helpful. If your loved one lives in a residential community, regularly scheduled phone calls with key community staff can help in addressing any concerns or changes. Tom and his siblings used available technology to get together on a quarterly basis via a computer video conferencing service to check in and coordinate the essentials of Peggy’s care.
  • Self-care. This is often overlooked, especially for long-distance caregivers. Taking time to take care of yourself means you’ll be available and healthy if circumstances change, are challenging. or become complex. Self-care can range from treating yourself to a massage, a nice vacation, an outing with a friend, participating in a support group and/or making sure you have regular health check-ups. Ask Community Living Connections about caregiver support programs—you may be surprised at the range of services available for unpaid primary caregivers as well as those who receive care.
  • Care coordination. It does take a village to support an older loved one who has health and cognitive considerations. Coordinating care from a distance can often be time-consuming and unmanageable. Working with an Aging Life Care professional (also known as a geriatric care manager) can help streamline the process by assisting in navigating transitions, changes, and serving as a local advocate on your loved one’s behalf. Care managers can help with care planning and know the local resources best.

While this is not a comprehensive list, it provides the foundational elements of long-distance caregiving. Getting organized with documents, communication, care coordination, and self-care can go a long way in providing you peace of mind and confidence that your loved one is getting the appropriate care and that their personal well-being and safety are being supported even when you are at a distance.

Contributor D’Anna Edison, MS, GMHS, LMHCA, CMC, is a Certified Care Manager with Aging Wisdom and a Geriatric Mental Health Specialist with a Master of Science degree in Professional Counseling with an emphasis in Gerontology. She has worked with older adults and their families for over 20 years.

This article originally appeared in the January 2019 issue of AgeWise King County.