Long-distance caregiving presents unique challenges. If you find yourself in the long-distance caregiving role, here is a summary of things to keep in mind.
1. Know What You Need to Know as a Long-Distance Caregiver
recommend that you learn as much as you can about your family member or friend's illness, medicines, and resources that might be available. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in healthcare management. It can also make talking with the doctor easier. Make sure at least one family member has written permission to receive medical and financial information. To the extent possible, one family member should handle conversations with all healthcare providers.
Try putting all the vital information in one place—perhaps in a notebook or in a shared, secure online document. This includes all the important information about medical care, social services, contact numbers, financial issues, and so on. Make copies for other caregivers and keep the information up to date.
2. Plan Your Visits with an Aging Parent or Relative
When visiting your loved one, you may feel that there is just too much to do in the time that you have. You can get more done and feel less stressed by talking to your family member or friend ahead of time and finding out what he or she would like to do. Also, check with the primary caregiver, if appropriate, to learn what he or she needs, such as handling some caregiving responsibilities while you are in town. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to get some new winter clothes or visit another family member? Could your father use help, fixing things around the house? Would you like to talk to your mother's physician? Decide on the priorities and leave other tasks for another visit.
3. Activities to do When Visiting an Aging Parent or Relative
Try to make time to do things unrelated to being a caregiver. Maybe you could find a movie to watch with your relative or plan a visit with old friends or other family members. Perhaps they would like to attend worship services. Offer to play a game of cards or a board game. Take a drive or go to the library together. Finding a little bit of time to do something simple and relaxing can help everyone, and it builds more family memories. And keep in mind that your friend or relative is the focus of your trip—try to let outside distractions wait until you are home again.
4. Get in Touch, and Stay in Touch
Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff so several relatives can participate in one conversation and get up-to-date information about a relative's health and progress. If your family member is in a nursing home, you can request occasional teleconferences with the facility's staff. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. You might also talk with a family member or friend in the community who can provide a realistic view of what is going on. In some cases, this will be your other parent. Don't underestimate the value of a phone and email contact list. It is a simple way to keep everyone updated on your parents' needs.
5. Help an Aging Parent Stay in Contact from Afar
For one family, having a private phone line installed in their father's nursing home room allowed him to stay in touch. For another family, giving Grandma a cell phone (and then teaching her how to use it) gave everyone some peace of mind. These simple strategies can be a lifeline. But be prepared—you may find you are inundated with calls or text messages. It's good to think in advance about a workable approach for coping with numerous calls.
6. Organize Paperwork for an Aging Parent
Organizing paperwork is one way that a long-distance caregiver can be a big help. An important part of effective caregiving depends on keeping a great deal of information in order and up to date. Often, long-distance caregivers will need access to a parent’s or relative's personal, health, financial, and legal records.
Getting all this material together is a lot of work at first, and from far away it can seem even more challenging. But once you have gathered everything together, many other caregiving tasks will be easier. Maintaining current information about your parent’s health and medical care, as well as finances, home ownership, and other legal issues, lets you get a handle on what is going on and allows you to respond more quickly if there is a crisis.
As you're getting started, try to focus on gathering the essentials first, and fill in the blanks as you go along. Talk with the older person and the primary caregiver about any missing information or documentation and how you might help to organize the records. It is also a good idea to make sure that all financial matters, including wills and life insurance policies, are in order. It will also help if someone has a durable power of attorney (the legal document naming one person to handle financial and property issues for another).
Your family member or friend may be reluctant to share personal information with you. Explain that you are not trying to invade their privacy or take over their personal lives—you are only trying to assemble what will be needed in the event of an emergency. Assure them that you will respect their privacy, and then keep your promise. If they are still uncomfortable, ask if they would be willing to work with an attorney (some lawyers specialize in elder affairs) or perhaps with another trusted family member or friend.
For a list of documents and other information to gather, see Getting Your Affairs In Order. Find more information about advance care planning.
7. Learn Additional Tips for Caregiving
Whether you are the primary caregiver or a long-distance caregiver, getting some caregiving training can be helpful. As with a lot of things in life, many of us don't automatically have a lot of caregiver skills. For example, training can teach you how to safely move someone from a bed to a chair, how to help someone bathe, and how to prevent and treat bed sores, as well as basic first aid. Information about training opportunities is available online. Some local chapters of the American Red Cross might offer courses, as do some nonprofit organizations focused on caregiving. Medicare and Medicaid will sometimes pay for this training.
8. Gather a List of Resources in your Aging Relative's Neighborhood
Searching the Internet is a good way to start collecting resources. Check with a local library or senior center, the Area Agency on Aging, or the Eldercare Locator to find out about sources of help.
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Having worked with unlicensed professional Caregivers in Assisted Living and Home Care settings for the past 24 years, I’d like to say “I’ve seen it all”, but the severe shortage we’re experiencing among the post-acute care services now is unprecedented, and frankly worrisome.
An Aging Life Care Professional, also known as a geriatric care manager, is a health and human services specialist who acts as a guide and advocate for families who are caring for older relatives or disabled adults. The Aging Life Care Professional is educated and experienced in any of several fields related to aging life care/care management, including, but not limited to nursing, gerontology, social work, or psychology, with a specialized focus on issues related to aging and elder care.
Aging Life Care Professionals are members of the Aging Life Care Association™ (ALCA) and must meet stringent education, experience, and certification requirements of the organization, and all members are required to adhere to a strict Code of Ethics and Standards of Practice.
Aging Life Care Professionals become the “coach” and significant others or clients the “team captain.”
Care Managers are:
• hired advocates for our clients who are impaired in some way and unable to effectively advocate for themselves or guide those who are wanting to plan for future care needs
• independent assessors of quality-of-life needs/goals and strive to make sure they are met
• assess the decline in our client’s cognitive and functional levels that needs to be addressed by key providers, i.e., care communities, PCPs, therapists, caregivers, etc.
• identify solutions and resources as issues of safety, security, and well-being are identified and assist with the implementation
• have extensive knowledge about the costs, quality, and availability of resources in their communities
• often have more knowledge of our client’s status, and therefore a better understanding of when health changes are occurring
• often have an established personal relationship establishing an element of trust which provides comfort and a sense of safety for them during our visits
• the eyes and ears for the families or friends of our clients, assisting them in navigating the care continuum and ensuring communication lines are open
• point person between services, including facilities, and significant others; we understand the system, how it works, reasonable expectations vs. unreasonable ones, etc.
• professionals with exceptional written and oral communication skills. They are great listeners and have the skills to manage family emotions when there are care issues that need to be addressed
Care Managers:
• coordinate and attend medical appointments to ensure continuity of care and accuracy and completeness of input to the providers, virtually and in-person and can relay this detail to significant others, plus recommend and secure appropriate medical resources
• assist with transitions of levels of care, discharges, Emergency Dept. visits, etc.
• coordinate and assess the selection of personal care companies, ensure quality and effectiveness of care, and collaborate with them and their management
We identify viable solutions that will minimize the decline and implement agreed-upon strategies to maintain their well-being. Most important, care managers are the advocate for the client and consult significant others/caregivers on an array of concerns and issues. And, we also conduct family meetings to create a sound plan of care, which can entail working through difficult past relationships to ensure the client’s wishes are known and needs be prioritized. Some care managers also assist clients with administrative tasks such as paying one’s bills, coordinating engaging activities to reduce isolation, and managing various home-related issues.
Jill Piazzi, MA/CMC Gray Matters Care Management www.GrayMattersCare.com