“I live 12 hours away from Mom and Dad; how can I help them on a daily basis?”
Whether you live 12 hours or 1 hour away from an ill or aging loved one, it is easy to feel isolated or overwhelmed. Rest assured that you are not alone. The National Institute on Aging estimates that 7 million Americans are long-distance caregivers – and as is the case with most caregiving statistics, that number is probably under-estimated.
As you start the caregiving journey, your first essential steps are planning and preparation. Long-distance caregivers must map their courses carefully and learn how to recognize and avoid detours and how to find alternative routes when delays or roadblocks occur. And they will need to do these things virtually or through others.
Information is your biggest navigational aid. You can research your loved ones’ disease or condition online, at your local library, or through your local disease-specific support group immediately upon diagnosis. The Internet is a powerful resource, but like all resources, it must be used intelligently. Especially when reviewing information online, it is really important to check your source. Who is responsible for the content? Is the author credentialed or certified…or selling something? Is the information dated? Are the opinions fact-based, or a matter of personal opinion? Do multiple sources corroborate the findings?
The best source of information is likely to be your loved one’s physician. Ask your loved one to sign a release form allowing the doctor to discuss their information with you. With the permission of your loved one, seek an appointment – even if by phone or email – to obtain more detailed information. The doctor or a member of their medical team may even arrange to provide email or telephone updates to you because you live out of town. The sooner you make these arrangements, the easier your journey will become.
Organization is the next step. Many caregivers find that keeping a journal or compiling a portfolio notebook that can be divided into sections is every bit as helpful as a GPS system in the car:
• Vital information deserves its own section in the notebook. If available, document and/or store full legal names, places and dates of birth; marriage and divorce certificates; social security numbers and military service numbers; stocks, bonds, and deeds; the date and place of military discharge and discharge paperwork (DD214); insurance, credit card, and bank account information; recent tax returns; and the location of safety deposit keys. If this information is not available, document where it can be found for future reference. Your loved one may have an attorney who handles their affairs, so you need a contact number for that individual; or, you may consider hiring an attorney to assist as each state has its own laws.
• Develop a personalized phone book. List the names, specialties and contact numbers of physicians involved in their care. Also list the numbers of neighbors, close friends, clergy and church members. Make sure that all these contacts also know the best way to reach you. At least one family member should have written permission to receive medical and financial information and this usually involves a signed release of information form.
• Use a section of the portfolio to create your own manual of the region’s resources. The information can often be obtained from the internet but a local phone book is invaluable especially if you have been living away from the area for any length of time. The directory should include senior centers and services, professional caregiving and in-home help agencies as well as recommended and visited assisted living and skilled nursing facilities. The physician should be able to offer direction with many of these services. There are also national agencies that can assist; the National Respite Network and Resource Center @ www.archrespite.org is a source of area respite information for caregiver relief or short- term placement until long term arrangements can be finalized; the National Hospice and Palliative Care Organization@ www.nhpco.org offers information on these agencies in a specified area and the Eldercare Locator @ www.eldercare.gov provides guidance in locating senior resources.
• Include a copy of advance directives, living wills, and power-of-attorney documentation for ease of access. Another copy should be kept in your loved one’s home and their primary physician should have one for the medical record.
• Keep a section for questions and answers.
In addition to the notebook, consider technology your best enabler. If your elderly parents don’t have cell phones, purchase a plan for them and program it with the contact numbers they need. If your loved one is tech-savvy, purchase a video-cam system so that you can have regular visits with them and actually see them. If your loved one is in a nursing home, see if you can install a private phone line in their room so you can reach out to them directly.
A few simple physical preparations are important for the long-distance caregiving journey. For example: keep a bag packed and ready to go. It’s impossible to know how quickly you may need to visit, so having your essentials ready to go will help you enormously. Make sure you take your notebook journal with you when you visit, and update it regularly with information, questions, and impressions.
Finally, if you are employed, talk to you employer as soon as possible about the caregiving situation you are facing. Most employers will be able to explain any company-specific benefits available to you. Ask in particular about FMLA- the Family Medical Leave Act- to protect your own employment status when you need to be away.
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