Living well with lupus

How can I manage being a caregiver from a distance?

According to the National Institutes of Health, Institute on Aging, if you do not live under the same roof as your loved one who has lupus, you may identify yourself as a “long-distance caregiver.” You could be providing care from hours away or even nearby, but not living together can result in some special challenges.

Just because you do not live with your loved one does not mean you are “immune from feeling overwhelmed or worried.” Many long-distance caregivers act as the primary information coordinators, helping their loved ones live and cope well with lupus.

An important part of effective caregiving depends on keeping a great deal of information organized and up-to-date, so that you can always be prepared.

As a long-distance caregiver, it is useful and suggested to have:

  • Access to your loved one’s personal, health, financial and legal records
  • Current information about their health and medical status, such as medications, records of flares, allergies, recent lab test results, etc.
  • Current lists of physicians and their contact information
    • You should also ensure the medical team has your contact information in case of an emergency
    • You can also request that the physicians follow up with you after routine visits to be sure you are in the loop.
  • An arranged time to check in: Arrange to call to your love one at the same time each day, so this becomes routine. By regularly communicating you will be better able to detect pain, fatigue, other issues such as depression, and emotions. This can help you gauge your loved one’s health and wellbeing. This knowledge also will give you peace of mind about how he or she is doing each day.
  • The contact information for someone close by to them such as a neighbor or roommate who can be an emergency contact and connection when you are not able to get there.
  • Access to technology: It is helpful, but not necessary, to have access to a smartphone or computer that allows you to use caregiver applications to coordinate volunteers and remain connected to your social support system. There are many available to download and can streamline the care coordinating process. One example is The Caring Bridge mobile application.

Medically reviewed on August 13, 2013

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