Caring from a Distance
6 Tips for Distance Caregivers
by Polly Mazanec, PhD, CNP
In the past, families often lived around the corner from one another, making it easy to help loved ones who were living with cancer. Now, caregiving is more challenging because many adult children live far away from their parents due to economic reasons, employment, and school. They are today’s “distance caregivers.”
Who is a distance caregiver?
A distance caregiver is someone who provides emotional and practical support to loved ones but lives too far away to provide day-to-day caregiving and to participate regularly in physician’s office or treatment visits. The National Council on Aging estimates that about seven million Americans are long-distance caregivers.
In a pilot study funded by the National Institutes of Health, distance caregivers of loved ones with cancer reported a need to feel more connected to the cancer care team, be more involved in the treatment discussions, and understand more about their loved ones’ well-being. Distance caregivers want to be involved and helpful to their families even though they cannot be physically present.
How can distance caregivers get involved?
Many distance caregivers have said they don’t know how they can be helpful to their families from far away. The good news is there are many things you can do as a distance caregiver.
1. Be a part of the team.
Your loved one’s oncologist and cancer care team need to know you are part of the family. The oncologist or nurse may not think to ask if there are distance caregivers who would like to be included in the plan of care. Ask your loved one to tell the healthcare team about you and to give them permission to talk with you. Then if you would like to ask the doctor questions about your loved one’s care or condition, you have access to firsthand up-to-date information.
2. Coordinate care from afar.
People undergoing cancer treatment may benefit from having someone clean their home, prepare meals, or help with daily care. From a distance, you can coordinate providers for this care. Contact local home care agencies to get nursing assistance in the home; enlist neighbors, friends, or church support for help with meals; or arrange for regular visits from a local housecleaning service. Offer to manage the bills, as this can often be overwhelming for someone undergoing treatment. This may also free up local caregivers so they can help with needs that can’t be handled from afar.
3. Stay connected to your loved one with cancer.
Many distance caregivers have said that they have wonderful conversations with their parents during treatment and are able to talk about things other than cancer, such as grandchildren’s activities, sports, politics, and movies. Things they might not talk about if their visits only involved trips to the cancer center or providing physical caregiving.
4. Communicate with the local caregivers.
Caregivers report a sense of pride about being able to “give back” to their loved ones. Since local siblings may be the ones providing the hands-on care, many distance caregivers have said they feel guilty because they can’t do this. Talk openly about what you can do to help and how important it is to you to be able to help. Picking up some of the practical tasks mentioned above can help both you and your local siblings feel good about the family working together.
5. Seek out reputable resources.
There are some wonderful online resources available to help distance caregivers provide care to loved ones with cancer. Many of these emphasize the importance of taking care of yourself as well as your loved one. Examples include Caring from a Distance (www.cfad.org), the National Alliance for Caregiving (www.caregiving.org), and the National Family Caregivers Association (www.nfcacares.org).
6. Consider using technology to feel more connected.
Many distance caregivers wish they could just see firsthand how their loved one looks rather than having to rely on reports from family members. Smartphones and computers with webcams make connecting free and easy.
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Dr. Polly Mazanec is program coordinator of the Oncology/Palliative Care Nurse Practitioner Program and an assistant professor in the Frances Payne Bolton School of Nursing at Case Western Reserve University in Cleveland, OH. Her area of research is distance caregiving of parents with cancer. She is also an advanced practice nurse at University Hospitals Seidman Cancer Center in Cleveland.
This article was originally published in Coping® with Cancer magazine, March/April 2012.