By Leslie Boyle-Milroy and Laura M. Johnson
When someone we care about falls ill or receives a dreaded medical diagnosis, our first impulse is often to rush to their side and offer love, care, and support. However, when your loved one lives far away from you, the option of staying close to them throughout their illness may not be an option. This can be especially true for conditions such as cancer, where every individual’s needs will vary based on the specific diagnosis and may last months or even years. Even if you cannot be physically close to your loved one, there are many ways that you, as a long-distance caregiver (LDC) can lend support and care no matter where you are.
This can be an extremely difficult and emotional time for all parties involved. Research has found that many individuals face competing feelings and emotions when it comes to providing distant care for an aging or ill loved one. Some days, you may feel guilt or frustration while other days you feel a sense of accomplishment and gratitude that you are able to support the person you care about.
Who is a long-distance caregiver?
First of all, remember that you are not alone. In our modern age, because of the nature of work, family, school, travel, etc, family and friend networks often spread across the country and even the world. Many of us do not live within close proximity of those we love, and due to other commitments, responsibilities, or financial limitations, may not be able to visit our loved ones as often as we wish.
As of 2017, between 5-7 million caregivers in the United States identified as long-distance caregivers (Cagle & Munn, 2017). The definition of long-distance caregivers varies, but in general, a LDC is anyone who is assisting someone with chronic physical, mental health, or cognitive issues, and who lives more than an hour away.
While family members who live closer to the patient typically handle more caregiving responsibilities, around one-third of caregiving occurs at a distance. Even if you live far away, you may still be able to serve as the primary caregiver to your loved one. In fact, a growing number of LDCs are the primary caregivers for their loved ones (Cagle & Munn, 2017). Although less research exists than is ideal, anyone who has experienced the uniquely challenging situation of providing long-distance care knows that geographic distance impacts patients and caregivers in a variety of ways.
Whether you are within driving or flying distance to your loved one or unable to visit in person, here are some ways to lend support, even when you cannot always be physically close.
Ways to support loved ones from afar
- Understand that care comes in many forms – Caregivers – near or far – support their loved ones through a variety of means, including social, physical, and financial support (Cagle & Munn, 2017). You may assist loved ones with money management, arrange for in-home care, create an emergency plan, or simply call them on a regular basis to say hello, share a story, or watch your favorite movie or television program simultaneously.
You might consider whether you can assist in the day-to-day operations of their lives, such as becoming more involved in financial, business, and household matters, or whether your time could be better used by providing more emotional and health-related support. Your contributions may be unique based on your skills, talents, and life experiences.
- Lend support to the primary caregiver – If you are not the primary caregiver, chances are that the person playing this role also needs support, gratitude, and time off on occasion. You can provide significant help by offering emotional support to a primary caregiver and showing them how much you appreciate them. Is there something nice you could do for them? Send them a certificate for a massage or a gift card to their favorite restaurant. You might also step in periodically to give the primary caregiver a break. You can do this in a small way even by calling or sending emails to the care recipient to keep them company and raise their spirits even when the primary caregiver is otherwise occupied.
- Gather information and research care options – The primary caregiver is likely the one that has been handling many of the details and recordkeeping, but these tasks can often be accomplished by someone farther away. You may offer to act as an “information gatherer,” locating professional care, in-home care, researching health concerns, contributing financially, paying bills, and sending out updates to friends and family.
- Practice patience and clear communication with all parties – Sometimes, families may find that coordinating caregiving responsibilities can provoke conflicts and resentment. This is very understandable, especially if the loved one is a parent and siblings farther away feel conflicted about their care. One study found that adult siblings caring for aging parents often have differing views on caregiving tasks and that the LDCs in their research often felt disappointed by the level of care given by those living closer. Unsurprisingly, this led to more disagreements. It cannot be overstated that practicing patience and clear communication will help to align your family and remember that you are all on the same team.
- Hold a family meeting (remotely or in-person) – One way to practice clear communication and delegate responsibilities is to have a family meeting. If possible, your loved one with the diagnosis should absolutely be present and asked to present their wishes. Ideally, this meeting should be done before there is an emergency, allowing family members to discuss the care needed now and what might be necessary for the future. Ask the patient his/her/their preferences.
- Create a “care plan” to reduce worry levels – During this family meeting, be sure to use the input of your loved one and the strengths and specialties of all the involved parties to create a care plan. This might include finances, cleaning, medicines, and doctor visit schedules, and even an assessment of the activities of daily living (ADLs) and how able your loved one is to manage these responsibilities. Any specific wishes and requests of your loved one should be the basis of the plan. Once a plan is in place, the group can divvy the tasks accordingly. Identifying a primary caregiver early on is helpful. Try to coordinate schedules to give the primary caregiver breaks and remember to share your appreciation for the work that they are doing.
- Ask your loved one how best you can support them – As mentioned above, your loved one living with the diagnosis should be consulted regarding their care preferences if at all possible. However, sometimes, a bit of investigation is needed to determine your loved one’s needs (National Institute on Aging, 2016). Your loved one may not want to worry you, and a phone call may not be the most informative way to determine if they need extra help. A short visit may give you a better sense of their needs, and with your loved one’s permission, you can help connect them to local community services.
Remember to practice self-compassion
Having a loved one fall ill or be diagnosed with a life-altering illness is extremely stressful, often confusing, and potentially deeply disorienting. Because you cannot be physically near your loved one, you are even more likely to express greater emotional stress than caregivers residing with or nearby care recipients. In fact, LDCs of elderly parents often describe that geographic distance contributes to more anxiety, worry, and the necessity for proactive care planning. For all of these reasons, it is crucial that you also remember to take care of yourself and your physical, mental, and spiritual needs.
Although distance may complicate the exchange of information or the ability to hold your loved one’s hand during this difficult time, there is no reason that you cannot be a pillar of love, hope, and support to your loved one no matter where they live.
Cagle, J.G. & Munn, J.C. (2017) Long-distance caregiving: a systematic review of the literature. J Gerontol Soc Work, 2012, 55(8):682-707. doi: 10.1080/01634372.2012.703763. PMID: 23078605; PMCID: PMC5653258. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5653258/
National Institute on Aging. (2016). Long-distance caregiving: Twenty questions and answers [Report]. https://order.nia.nih.gov/sites/default/files/2017-07/L-D-Caregiving_508.pdf
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