How to Be an Effective Long-Distance Caregiver

Based on content from the NIH/National Institute on Aging publication, “So Far Away.”


Being a caregiver for a friend or relative who lives in a different town can be a logistical challenge.

Without regular, day-to-day contact, it's hard to fill critical, caregiving needs.

One way long-distance caregivers can make a connection is to find out as much as possible about the person they're caring for. Are legal and personal documents and records in order? What is the person's health care status? Is their home safe? Are they keeping up with their medical appointments?

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 personal, health, financial and legal records. If you have ever tried to gather and organize your own personal information, you know what a chore it can be. 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.

Your parents 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 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.

Here are some common problems and solutions for family members caring for a parent, relative or friend who lives far away.

My parents are in their 70s and have not said anything about their future healthcare preferences. Since they are still relatively healthy, do we need to talk about that now?

For most of us, talking with people about the kind of medical care they would want if they are seriously ill and unable to make decisions can be difficult. But when the conversation is with someone close to you, it can be many times harder for everyone. Yet it’s important to be prepared, especially in case of unexpected illness.

When talking about medical care, assure your parents that as long as they are alert, they will be the ones to make decisions. But documenting their health care wishes is important. Health care providers can’t know your parents’ preferences unless they are included in their medical records. Having these wishes on the record allows your parents to receive the care they want. It may also help avoid some of the conflicts that can occur when family members disagree over treatment decisions.

Advance care planning is often done through an advance directive, which includes verbal and written instructions about future medical care. There are two types of advance directives — a living will and a durable power of attorney for health care. A living will states in writing what kinds of life-sustaining medical treatments, if any, a person wants if he or she is unable to speak or respond and at risk of dying. A durable power of attorney for health care names someone to make medical decisions in that same type of situation. This person, called a healthcare proxy, can decide on care based on what he or she knows the patient would want. It is vital for your parents to discuss their wishes with the health care proxy.

How do I help my parents choose a heath care proxy?

Naming a healthcare proxy is an extremely important decision. Living nearby is not a requirement to be a health care proxy, also called “health care agent” or “surrogate.” Even a long-distance caregiver can be one. Most people ask a close friend or family member to be their health care proxy. Some people turn to a trusted member of the clergy or a lawyer. Whomever is chosen should be able to understand the treatment choices, know your parents’ values and support their decisions.

Advance directives are not set in stone. You might want to let your parents know that they can revise and update their instructions as often as they wish. Patients and caregivers should discuss these decisions — and any changes in them — and keep the health care team informed. Consider giving copies of advance directives to all caregivers and to your brothers and sisters. Keep a copy at home as well. Because state laws vary, check with your Area Agency on Aging, your state department of aging or a lawyer for more information.

This year, my wife and I decided to spend our vacation with my mom at her house. My brother and his partner will also be there. We’d like to see how we can make the house safer for my mom who is a little frail. How can we make the best use of our time?

You can’t anticipate every problem, but go through the house room by room and check. Some things will need to be taken care of right away. Pay careful attention to your mom — especially how she seems to be and how she manages in her home.

• If your mom is still driving, can you assess her road skills?
• How is your mom’s health? Is she taking several medicines? If so, could the pills be better organized?
• What about her mood: does your mom seem depressed or anxious?

Discuss your concerns and offer to help adapt the environment to meet your parent's changing safety needs.

There are a variety of things you can do that will make surroundings safer, more accessible and more comfortable. First, quickly correct any real dangers. Don’t wait until the next visit. Once the urgent issues are addressed, you and your brother can start working on other ways to make sure your mom will be out of harm’s way. Use these home safety suggestions as a starting point:

• Are the stairs manageable, or is a ramp needed?
• Are there any tripping hazards at exterior entrances or inside the house (throw rugs, for example)?
• Are any repairs needed?
• Is the house well-lit, inside and out? Do any bulbs need to be replaced?
• Is there at least one stairway handrail that extends beyond the first and last steps on each flight of stairs?
• Is there carpeting or safety grip strips on stairs?
• Is there clutter, which can cause disorientation and confusion and increase the risk of falling?
• Are all walk areas free of furniture and extension and electrical cords?
• If a walker or wheelchair is needed, can the house be modified? Perhaps putting in a ramp to the front door?
• Is there food in the refrigerator? Is any of it spoiled? Are there staple foods (like cereal, sugar, canned soup) in the cabinets?
• Are bills being paid? Is mail piling up?
• Is the house clean?

It is sometimes easier to change a place than to change a person. If you're helping your mother make the house safer for your father, in spite of his memory problems, some steps include:

• Talking with her mother about ways to remember to lock all doors and windows to prevent her father from wandering.
• Making sure all potentially harmful items, like medications, weapons, machinery or electrical cords are put away in a safe, preferably locked place when they’re not in use.
• Using child-resistant caps on medicine bottles, childproof latches on cabinets, and childproof plugs in unused outlets.

How can I keep up with my mom’s medical care? I don’t know where to start.

Health care experts recommend that you start by learning as much as you can about your parent’s illness, its likely course and current treatments. This information will be essential as you help your parent and the primary caregiver cope with day-to-day concerns, make decisions, and plan for the future. You can do this by discussing your mom’s diagnosis with your own health care provider or gathering reliable health information. Contacting a government agency is a good way to find information you can trust.

When you visit your parent, consider going along on a doctor’s appointment.

When you visit your parent, consider going along on a doctor’s appointment — first check that your parent does not mind having you there. You must have your parent’s permission to have any conversation with his or her doctor or to discuss health care bills with Medicare or other health insurance. Ask your parent to complete a release form that allows the doctor to discuss his or her medical care with you. Be sure the release is up to date and that there’s a copy in your parent’s medical records, in addition to keeping a backup copy for your files.

Some long-distance caregivers say that making a separate appointment with a doctor allows them to seek more detailed information and answers to questions.
You might have to pay for these appointments yourself. Or see if the doctor will agree to provide email or telephone updates to you or other family members who live out of town.

I’m visiting my dad for a week, and he has asked me to come along on his medical appointment. How can I make the most of this visit with his doctor? I don’t want to waste the doctor’s time.

If you go with your parent to see the doctor, here are a few tips that will help you be an ally and an advocate:

• Bring a list of questions, starting with what is most important to you and your parent, and take notes on what the doctor recommends. Both the questions and the notes you write down can be helpful later, either to give information to the primary caregiver or to remind your parent what the doctor said.
• Before the appointment, ask your parent, the primary caregiver, and your siblings if they have any questions or concerns they would like you to bring up.
• Bring a list of all medicines and dietary supplements your parent is taking, both prescription and over-the-counter, and include the dosage and schedule. If your parent sees several different doctors, one may not necessarily know what another has prescribed.
• When the doctor asks a question, let your parent answer unless you have been asked to do so.
• It’s easy to get into a two-way conversation between the doctor and yourself—try not to do this. Always include both your parent and the doctor when you talk.
• Respect your parent’s privacy, and leave the room when necessary.
• Talk to the doctor about how you can keep up-to-date on your parent’s health since you live out of town.
• Ask the doctor to recommend helpful community resources.
• Larger medical practices, hospitals, and nursing homes may have a social worker on staff. The social worker may have valuable suggestions about community resources and other information.

If you are worried that your parent might be depressed, you might want to discuss this with the doctor before the appointment. Depression is not a normal part of aging. Emotions like sadness, grief and temporary “blue” moods are normal, but continuing depression that interferes with daily living is not okay. Yet even some health professionals seem to think it is a normal response to the illnesses and other problems that can happen as we grow older. Make sure the doctor is taking action in response to your concerns.

More:
Support for long-distance caregivers

By NIH/National Institute on Aging