So Far Away: Twenty Questions and Answers About Long-Distance Caregiving
Things You Can Do
My friends who have been caregivers say that a lot of what they did was organizing paperwork. Is that a good way to be helpful?
Yes. That's 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 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.
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 the kinds of records that 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. It is also a good idea to check at the same time to make sure that all financial matters, including wills and life insurance policies, are in order. It will also help if someone also has a durable power of attorney (the legal document naming one person to handle financial and property issues for another)
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.
What information should a caregiver keep track of?
The answer to this question is different for every family. You might want to help organize the following information and update it as needed.
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.
As a long-distance caregiver, you might want to wait until you are face to face with your parents, rather than try to handle this sensitive subject on the phone. During a visit, you could try saying that you have just made your living will, or you could tell them you've chosen someone to make your healthcare decisions. A friend or neighbor's illness might also jumpstart a conversation about healthcare preferences. For some families, a conversation about, for example, who would like Grandma's china could be a gentle way to start the discussion. Would you rather begin on a less personal note? Discussing a TV show, newspaper article, or movie might be the way to start.
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 healthcare wishes is important. Healthcare 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 healthcare proxy.
Naming a healthcare proxy is an extremely important decision. Living nearby is not a requirement to be a healthcare proxy, also called "healthcare agent" or "surrogate." Even a long-distance caregiver can be one. Most people ask a close friend or family member to be their healthcare proxy. Some people turn to a trusted member of the clergy or a lawyer. Whoever is chosen should be able to understand the treatment choices, know your parents' values, and support their decisions.
Whoever 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 healthcare 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.
How can I find information about financial assistance for my parents who live across the country from me? They saved money for retirement, but the cost of their medical care is really high, and they are worried.
You and your parents are not alone in worrying about how much medical care costs. These expenses can use up a significant part of monthly income, even for families who thought they had saved enough. Your parents may be eligible for some healthcare benefits. As a long-distance caregiver, one way you can be helpful is by learning more about possible sources of financial help and then assisting your parents in applying for aid as appropriate. The internet can be a helpful tool in this search.
There are several federal and state programs that provide help with healthcare-related costs. Here is an overview to help you get started.
The Centers for Medicare & Medicaid Services (CMS), the federal agency responsible for Medicare, offers several programs. Over time, the benefits and eligibility requirements of these programs can change and differ from state to state, so it is best to check with CMS, www.cms.gov, or the individual programs directly for the most recent information. People on fixed incomes who have limited resources may qualify for Medicaid, www.cms.gov/home/medicaid.asp. This program covers the costs of medical care for people of all ages who have limited income and meet other eligibility requirements. Under Medicare, some states have PACE, Program of All-Inclusive Care for the Elderly, www.pace4you.org. This is a program providing care and services to people who otherwise would need care in a nursing home. SHIP, the State Health Insurance Counseling and Assistance Program, www.medicare.gov/Contacts, offers counseling and assistance to people and their families on Medicare, Medicaid, and Medigap matters.
If your parent is eligible for veterans benefits, don't forget to check with the Department of Veterans Affairs (VA), www.va.gov. Or, get in touch with the VA medical center nearest you.
For information about other federal, state, and local government benefits, go to www.benefits.gov. If you don't have a computer, call 1-800-FED-INFO (1-800-333-4636).
The National Council on Aging website,www.benefitscheckup.org, is another good place to start. By providing some general information about your parent, you can see a list of possible benefits you might want to explore. You don't have to give the name, address, or Social Security number in order to use this service.
If prescription medicines cost too much, ask the doctor if there is a less expensive medication or a generic choice. Learn more about Medicare insurance for prescription drugs at www.medicare.gov/find-a-plan/questions/home.aspx, or call Medicare or SHIP. Also, the Partnership for Prescription Assistance, www.pparx.org, can provide a list of patient assistance programs supported by pharmaceutical companies.
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?.
If you feel that your mother is unsafe alone because of her health, make note of which behaviors have become most dangerous and discuss these with her primary caregiver, if there is one, and her doctor. This is one way a long-distance caregiver can be helpful. You can provide a fresh look when evaluating the situation. Behavior that is unsafe or unhealthy may have become familiar to the primary caregiver. Discuss your concerns and offer to help adapt the environment to meet your parent's changing safety needs.
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 your mom's 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 fridge? Is any of it spoiled? Are there staple foods (such as 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. For someone like Rhea, who is helping her mom make the house safer for her dad to live comfortably in spite of his memory problems, some steps include:
- Talking with her mom about ways to remember to lock all doors and windows to prevent her dad from wandering.
- Making sure all potentially harmful items, such as 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.
Healthcare 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 healthcare provider or gathering reliable health information. Contacting a government agency, like the National Institutes of Health (NIH), or visiting its website, www.nih.gov, is a good way to find information you can trust.
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 healthcare 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.
When you visit your parent, consider going along on a doctor's appointment.
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.
Evaluating Health Information Online
Many people search online to learn more about medical concerns. But not all health information online is of equal quality. The following questions may help you decide if the source you find on the internet is reliable:
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.
Publication Date: August 2010
Page Last Updated: March 24, 2014