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Leah Eskenazi, Family Caregiver Alliance

How to care for your aging parents from a distance

Health

Concern about mom or dad’s health and well-being is top of mind for many baby boomers today. Worrisome signs of your parent’s frailty, progressive memory loss or the decline in health require more and more of your help and attention. But what if you live a good distance away? Whether you live an hour away, in a different state, or maybe even in another country, caregiving at a distance presents very real challenges.

No longer just a devoted daughter or son, you’re now what the professionals in the aging field call a “long-distance caregiver.” Thrust into what is often a new world of intricate responsibilities, you may find it hard to see the personal rewards ahead. But they are there, as is the help available to assist you on this caregiving journey.

There is no one right way to be a caregiver; everyone’s situation is different. You will find that, among a host of things, family dynamics, financial resources and the ability of your parent(s) to provide guidance for the support that they desire will shape your situation.

You can expect your caregiving responsibilities to include, at a minimum, two key functions: information gatherer (from your parent[s], websites, books, word of mouth, etc.) and coordinator of services (contacting potential service providers, scheduling, coordinating payment, monitoring medical care). Do plan on traveling and spending some time on the phone to arrange care and services.

Critical Information

It will help you immensely if, before there is a crisis, your parent(s) provide you with information to locate their important records, phone numbers, email addresses and other essential contact information. If a crisis has already occurred, such as a stroke or traumatic brain injury, this information is still important to gather, but it may require more detective work on your part.

  • Family Caregiver Alliance’s “Where to Find My Important Papers” will help you collect information which will simplify communication with government agencies such as Social Security or the Veterans Administration, help with banking and other financial transactions, and make speaking with your parent’s attorney, accountant and physician easier.
  • Legal documents, such as Durable Power of Attorney for Health Care and Durable Power of Attorney for Asset Management can and should be prepared before a health condition makes it impossible for your parent to do so. For more information, read, “Legal Issues in Planning for Incapacity.”

    • One organization to contact to find an attorney knowledgeable about estate planning or with special training in elder law is the National Academy of Elder Law Attorneys.

  • To keep things in order, long-distance caregivers will benefit from keeping a care notebook — a central place to keep the important information that you gather. A number of care notebook templates — hard copy or digital — are available for purchase. Or you can create your own, either a digital version or by using a good old three-ring binder with pocket dividers. Be sure your notebook contains current information on your parent’s prescriptions.
  • If paid caregivers are employed to provide care to your loved one, you will want them to maintain a separate notebook documenting medication administration, vital signs, and other key physical and mental health status information. We’ll talk more about privately hired caregivers in another column.

    • If you feel overwhelmed at any point, never hesitate to call in a friend or professional to help. An objective advisor knowledgeable about Medicare and Medicaid can be immensely helpful in sorting out health care eligibility and coverage. A social worker (National Association of Social Workers) or geriatric care manager (National Association of Professional Geriatric Care Managers) can facilitate a family meeting to help prepare a care plan and/or deal with family dissension. No one can master everything, not even the people who are experts in their field. The solution lies in putting together a team and using each team member’s strengths — including yours.

    To help you get started, here are a few key tips to keep in mind:

  • Communicate: As much as possible, involve the one who needs care in any decision making process, especially those related to care and housing. Be sure to listen to his or her expressed preferences and respect their known values, even when these differ from yours. Instructions to paid caregivers should be in writing.
  • Learn what help is available: Educate yourself on the care and services available. Although every area is unique in the type of services that are offered, similar kinds of services are found throughout the U.S. (e.g. adult day care, home care, case management, etc.). Eldercare Locator at (800) 677-1116 can direct you to the Area Agency on Aging appropriate for your parent(s). FCA’s Family Care Navigator offers a state-by-state searchable database to help you locate help in your state.
  • Taking care: Take care of yourself. Caregiving can be stressful. Create a support network for yourself. Talk with friends and family. Allow yourself to hire help or involve other family members. Trying to do it all yourself is not healthy for you or your loved one.
  • Changing needs: Understand that care needs will change over time; it’s not too early to think about possible future needs. Once you locate resources, speak to a social worker who has experience in planning for eldercare. There are many options to be considered, and you’ll want to make informed, well-thought-out decisions about your parent’s care.

    • The sudden realization of your new role as a caregiver is likely to be stressful. How can you be both a caring daughter or son and the coordinator of a multitude of tasks required when taking on the day-to-day responsibilities of a loved one? You may feel overwhelmed and isolated. In reality, you have lots of company. Approximately 76 million of us are baby boomers, many with parents who are approaching a time in their life that will require aid and assistance. We know that an estimated 43.5 million Americans provide or manage care for a relative or friend 50+ years or older. And this number is growing every day.

    The good news is that with so many of us involved in care from a distance, there’s lots of information to help. Here are a few additional guides offering checklists and specific tips to help you in your long-distance caregiving journey.

    More Information & Resources

    Family Caregiver Alliance: National Center on Caregiving
    Handbook for Long-Distance Caregivers: An Essential Guide for Families and Friends Caring for Ill or elderly Loved Ones

    The National Institute on Aging
    So Far Away: Twenty Questions and Answers About Long-Distance Caregiving

    AARP
    Tips for Long distance Caregivers

    Long-Term Care Options Explored on PBS NewsHour:

    About Family Caregiver Alliance

    National Center on Caregiving
    785 Market Street, Suite 750
    San Francisco, CA 94103
    (415) 434-3388
    (800) 445-8106
    Website: www.caregiver.org
    E-mail: info@caregiver.org

    Family Caregiver Alliance (FCA) offers an extensive online library of free educational materials for caregivers. The publications, webinars and videos offer families the kind of straightforward, practical help they need as they care for relatives with chronic or disabling health conditions.

    Family Care Navigator is FCA’s online directory of resources for caregivers in all 50 states. It includes information on government health and disability programs, legal resources, disease-specific organizations and more.

    Residential Care Search: listings by geographic area.

    More Family Caregiver Alliance Posts in This Series:

    Additional Helpful Publications from Family Caregiver Alliance:

    Founded in 1977, Family Caregiver Alliance was the first community-based nonprofit organization in the U.S. created to address the needs of caregivers. FCA and its National Center on Caregiving are nationally and internationally recognized for pioneering programs—information, education, research and advocacy—that support and sustain the important work of families and friends caring for loved ones with chronic, disabling health conditions. Visit www.caregiver.org or call (800) 445-8106 for more information.

    By —

    Leah Eskenazi, Family Caregiver Alliance

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