Long-distance caregiving takes many forms—from helping manage the money to arranging for in-home care; from providing respite care for a primary caregiver to helping a parent move to a new home or facility. Many long-distance caregivers act as information coordinators, helping aging parents understand the confusing maze of home health aides, insurance benefits, and durable medical equipment.
Caregiving is often a long-term task. What may start out as an occasional social phone call to share family news can eventually turn into regular phone calls about managing health insurance claims, getting medical information, and arranging respite services. What begins as a monthly trip to check on Mom may turn into a larger project to move her to a nursing facility close to your home.
If you are a long-distance caregiver, you are not alone. Approximately 7 million adults are long-distance caregivers, mostly caring for aging parents who live an hour or more away. Historically, caregivers have been primarily mid-life, working women who have other family responsibilities. That's changing. More and more men are becoming caregivers; in fact, men now represent over 40 percent of caregivers. Clearly, anyone, anywhere can be a long-distance caregiver. Gender, income, age, social status, employment—none of these prevent you from taking on caregiving responsibilities.
What You Should Do (or Think About Doing)
Seek out help from people in the community: the next door neighbor, an old friend, the doctor. Call them. Tell them what is going on. Make sure they know how to reach you.
Take steps to identify options to help the primary caregiver. He or she may not need the help now, but having plans and arrangements in place can make things easier if there is a crisis.
Try to find a directory of senior resources and services by checking with a library or senior center for lists of resources. Get several copies—one for yourself and one for the primary caregiver. This helps everyone learn what's out there and perhaps to start "plugging into the networks." Don't forget to check for updates.
Pull together a list of prescriptions and over-the-counter medications. Get doses and schedules. This information is essential in a medical emergency. Update it regularly.
When you visit, go through the house looking for possible hazards (such as loose rugs, poor lighting, unsafe clutter) and safety concerns (such as grab bars needed in the bathroom). Stay for a weekend or week and help make needed improvements.
Find out if your parent has an advance directive stating his or her health care treatment preferences. If not, talk about setting one up. If so, make sure you have a copy and you know where a copy is kept. You might want to make sure the primary caregiver has a copy. The doctor should also have a copy for the medical record.
How to Know if Extra Help is Needed
In some cases, the sudden start of a severe illness will make it clear that help is needed. In other cases, your relative may ask for help. When you live far away, you have to think carefully about possible signs when help is needed. You might want to use holiday trips home to take stock.
Some questions to answer during your visit include:
- Are the stairs manageable or is a ramp needed?
- Are there any tripping hazards at exterior entrances or inside the house (throw rugs, for instance)?
- If a walker or wheelchair is needed, can the house be modified?
- Is there food in the fridge? Are there staples in the cupboards?
- Are bills being paid? Is mail piling up?
- Is the house clean?
- If your parents are still driving, can you assess their driving skills?
- How is their health? Are they taking several medications? If so, are they able to manage their medications?
- What about mood: Does either parent seem depressed or anxious?
Many long-distance caregivers provide emotional support and occasional respite to a primary caregiver who is in the home. Long-distance caregivers can help arrange for professional caregivers, hiring home health and nursing aides, or locating assisted living and nursing home care. Some help a parent pay for care, while others offer to manage their finances.
Caregiving is not easy for anyone, not for the caregiver and not for the care recipient. From a distance, it may be especially hard to feel that what you are doing is enough, or that what you are doing is important. It usually is.
Tips for Long-Distance Caregivers
Know what you need to know. Experienced caregivers recommend that you learn as much as you can about your parent's illness and treatment. Information can help you understand what is going on, anticipate the course of an illness, prevent crises, and assist in disease management. It can also make talking with the doctor easier. Learn as much as you can about the resources available. Make sure at least one family member has written permission to receive medical and financial information. Try putting together a notebook, or something similar, that includes all the vital information about health care, social services, contact numbers, financial issues, etc. Make copies for other caregivers.
Plan your visits. When visiting your parent, 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 parent ahead of time and finding out what he or she would like to do. This may help you set clear-cut and realistic goals for the visit. For instance, does your mother need to go to the mall or to 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 to another visit.
Remember to actually spend time visiting with your family member. Try to make time to do things unrelated to being a caregiver. Maybe you could rent a movie to watch with your parents, or visit with old friends or other family members. Perhaps your aunt or uncle 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.
Get in touch and stay in touch. Many families schedule conference calls with doctors, the assisted living facility team, or nursing home staff to get up-to-date information about a parent's health and progress. If your parent is in a nursing home, you can request occasional teleconferences with the facility's staff. Some families schedule conference calls so several relatives can participate in one conversation. Sometimes a social worker is good to talk to for updates as well as for help in making decisions. The human touch is important too. Try to find people in your parent's community who can be your eyes and ears and provide a realistic view of what is going on. In some cases, this will be your other parent.
Help your parent stay in contact. 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 the grandmother a cell phone (and then teaching her to use it) gave everyone some peace of mind. You can program telephone numbers (such as doctors', neighbors', and your own) into your parent's phone so that he or she can speed-dial contacts. Such simple strategies can be a lifeline for you and your parent. But be prepared—you may find you are inundated with calls from your parent. It's good to think in advance about a workable approach for coping with numerous calls.
Get a phone book. Get a local phonebook, either hard copy or online, that lists resources in your parent's neighborhood. Having a copy of the phone book for your parent's city or town can be really helpful. The "Blue Pages" can provide an easy guide to state and local services available in your parent's hometown.
Involving Siblings in Care
Its a common dilemma: "How can my family decide who does what? My brother lives closest to our mother, but he's uncomfortable coordinating her health care."
Be sure to talk with other family members and decide who will be responsible for which tasks. Think about your schedules and how to adapt them to give respite to a primary caregiver or to coordinate holiday and vacation times. One family found that it worked to have the long-distance caregiver come to town while the primary caregiver was on a family vacation. And remember, if you aren't the primary caregiver, offering appreciation, reassurance, and positive feedback is also a contribution.
Know Your Strengths/Set Your Limits
If you decide to work as a family team, it makes sense to agree in advance how your skills can complement one another. Ideally, each of you will be able to take on tasks best suited to each person's skills or interests. For example, who is available to help Mom get to the grocery store each week? Who can help Dad organize his move to an assisted living facility? After making these kinds of decisions, remember that over time responsibilities may need to be revised to reflect changes in the situation or your parent's needs. Be realistic about how much you can do and what you are willing to do.
When thinking about your strengths, consider what you are particularly good at and how that skill might help in the current situation:
- Are you best on the phone, finding information, keeping people up-to-date on changing conditions, and offering cheer?
- Are you good at supervising and leading others?
- Are you comfortable speaking with medical staff and interpreting what they say to others?
- Is your strongest suit doing the numbers—paying bills, keeping track of bank statements, and reviewing insurance policies and reimbursement reports?
When reflecting on your limits, consider:
- How often, both mentally and financially, can you afford to travel?
- Are you emotionally prepared to take on what may feel like a reversal of roles between you and your parent—and to respect your parent's autonomy?
- Can you be both calm and assertive when communicating from a distance?
- How will your decision to take on care responsibilities affect the rest of your family and your work?
Documents You Need
Effective caregiving depends on keeping a great deal of information in order and up-to-date. Often, long-distance caregivers will need to have information about a parent's financial, personal, health, and legal records.
If you have ever tried to gather and organize your own personal information, you know what a chore it can be. Gathering and organizing this information from far away can seem even more challenging. Maintaining up-to-date 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 quickly if there is a crisis.
If you do not see your parent often, one visit may not be enough time for you to get all the paperwork organized. Instead, try to focus on gathering the essentials first; you can fill in the blanks as you go along. You might begin by talking to your parent and his or her primary caregiver about what records need to be pulled together. If a primary caregiver is already on the scene, chances are that some of the information has already been assembled. Talk about any missing information or documentation and how you might help to organize the records.
Your parents may be reluctant to share personal information with you. Explain you're not trying to invade their privacy or take over their lives—you are only trying to assemble what they (and you) will need in the event of an emergency. Assure them that you will respect their privacy and keep your promise. If your parents 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.