Editor’s note: The coronavirus pandemic and preventative measures that followed – including social distancing and reducing travel – have resulted in many people being physically distant from their loved ones with pancreatic cancer. So, we’re re-sharing this blog on caregiving from a distance for those who want to help but don’t know how they can do so from afar.
Even if you live far away from a family member or a close friend with pancreatic cancer, the distance does not need to prevent you from helping them. Support is critical for patients with the world’s toughest cancer. But how can a long-distance caregiver play a meaningful role?
“You need to be realistic and honest about what you can and cannot do from a distance,” says Nicole Lise Feingold, MA, senior director of Scientific and Medical Affairs for the Pancreatic Cancer Action Network (PanCAN). “Feelings of guilt and confusion can arise for people who live far away from those they care for with this disease. But in order to alleviate those feelings, you need to be mindful of what’s feasible for you.”
How do you get started caring for a patient from a long distance?
- Ask the patient and the primary caregiver how you can help them the most
- Find out as much as possible about the patient’s diagnosis, condition and treatment
- Speak with friends who have experienced a similar situation about what they suggest
What can you do to help when you live far from the patient?
- Organize finances and health insurance claims
- Learn about managing the financial impact of pancreatic cancer
- Collect medical information and digitize it to share with their other caregivers online
- Assist with legal needs that involve healthcare decisions
- Set up in-home care such as nursing aides, medical equipment, cleaning or meal services
- Find assisted living facilities
- Arrange short-term relief for the primary caregiver
- Give emotional support by phone or video calls, letters, social media, text and email
- Update loved ones about current status and new developments
- Contact friends of the patient to help
How can you stay connected from far away?
“With permission, share your contact information with someone who lives near the patient to partner with and regularly communicate about the patient’s needs,” suggests Feingold.
If it’s acceptable to the patient and primary caregiver, contact the healthcare team individually to introduce yourself as a caregiver, and give them your contact information. You may need to get written permission or sign a release to receive any medical information.
Conference calls with the healthcare team, loved ones and caregivers can also bring everyone together to get the latest information at one time and keep people on the same page. You can also ask someone to record appointments, with the doctor’s permission, so you can listen directly to the conversation rather than asking someone to relay it. And take advantage of sharing an email/phone contact list with each other.
When someone you love has pancreatic cancer, you may feel overwhelmed by the challenges of trying to provide care from a long distance. To help you cope with these struggles emotionally, reach out to support services such as PanCAN’s Survivor & Caregiver Network.