Dr. Amy Case Study: Engaging Long-Distance Siblings in Caregiving

Ginette* recently called me because she felt like she was “at the end of her rope.”  She had been providing care and support to her parents, who were living in their own home. Her dad has Parkinson’s disease and her mom is struggling with her own health challenges. Ginette knew that major decisions about housing and care needed to be made in the near future, and she was feeling overwhelmed.

I asked Ginette about other family members that might be able to help her in providing support to her parents. She told me she had one sister, *Marta, who lives several hours away. Ginette said she and Marta had a good relationship, but she was getting increasingly frustrated that the whole responsibility of caring for their parents was falling to her.

Ginette was describing a common way of framing her role: defining herself as “the” caregiver without any help from other family members, especially those living far away. I suggested to her that, instead of seeing herself as the only caregiver, she think of herself as the primary caregiver in a caregiving family. This new view would allow for a different discussion between her and Marta, one in which they both would have responsibility for taking an active role in supporting their parents.

I asked Ginette to make a list of everything she does to help her parents so we could discuss it. When she went through her caregiving list with me, I suggested several ways in which Marta could be a “caregiver from a distance,” something I am very familiar with because I was a long-distance caregiver to my parents for many years.

From Ginette’s list of responsibilities, the following are things she realized her sister could do from a distance:

  • Manage their parents’ finances through online banking and online bill paying
  • Call their parents on a regular basis to provide emotional support
  • Call Ginette on a regular basis to get updates on their parents and provide emotional support to her
  • Act as a “thought partner” with Ginette and their parents about making plans for future care and living arrangements
  • Set up doctor’s appointments and physiotherapy appointments
  • Call to arrange transportation to appointments
  • Use vacation time to give Ginette the opportunity to go away. This would also give her sister an opportunity to get a more realistic picture of their parents’ needs. I describe this as the difference between watching a movie versus looking at a photo. When family members visit for a few hours or a day, they often get an inaccurate view of the day-to-day lives of older family members, as it’s more like a quick snapshot. A longer visit provides a more accurate view, like watching many scenes of a movie.

Ginette started to feel less burdened just knowing there were things Marta could do. I suggested that she call Marta and let her know that providing support to their parents was taking more and more time, she was feeling exhausted, and could really use some help. Ginette was surprised when Marta replied, “I had no idea you needed help. You seem to manage everything so easily.” This is a common story I hear from primary caregivers: When they talk with other family members about needing some support, they find out their siblings truly had no idea they needed help. I believe this is usually because family members assume that “no news is good news,” and that’s why it is so important to share as much information with them as possible.

It’s true that not every family member will jump in as willingly as Marta did. However, you won’t know unless you give them the opportunity. It starts with being more deliberate about sharing information about changing care needs and concerns you may have. And you may also need to make requests for help with specific tasks.

Supporting some of the care needs of aging parents can now be done more easily from a distance, thanks to technology. That is good news for local caregivers who need to share the responsibilities. Ask yourself if you could benefit from the help of family members living far away. Then take the important step of talking with them!

Dr AmyAbout Dr. Amy D’Aprix

Dr. Amy is a certified senior advisor, Vice President of the International Federation on Aging, and Co-Founder of the Essential Conversations Project. As a gerontological social worker, she has over thirty years of experience working with older adults and their families.