When caregivers become friends

Sometimes you realize that another person’s journey is as complex and vivid as your own. When three caregivers enrolled in the virtual TeleSTELLA study last fall, they didn’t expect to realize that their individual caregiving experiences were in fact aligned in many ways.

Amy, a former social worker, Edna, a former college guidance counselor, and Georgia, who formerly worked in adventure travel, got the chance to reflect about their struggles and triumphs during their journey of caring for their partners who were diagnosed with dementia. As their friendship grew, they learned a lot of lessons from each other, such as:

  • Having compassion for yourself: As Amy mentioned “No blame, no shame. It’s important to have compassion for yourself, especially in the context of interacting with a brain that works in a different way than you’ve ever known it to work before.”
  • Being adaptable and flexible: As Edna mentioned, it’s important to be flexible to different situations and to stop and reflect about an issue before trying to resolve it. She says “My mantra right now is – each day is a new adventure.”
  • Having a supportive network: All three caregivers mentioned how validating it felt knowing that they were not alone in their experiences. They were able to share ideas, tips, and resources, such as what types of tieless elastic shoelaces worked best. As Georgia said, “We gave each other support and advice. We knew it’s like to walk in each other’s footsteps as we dealt with this cruel and horrible disease.”
Edna and Georgia got the chance to meet up after the Tele-STELLA study concluded.

Though they are all in a different place with the disease and though they do not reside in the same cities, Amy, Edna and Georgia know that they continue to share advice, reminisce, and keep in touch. They all recommend joining a caregiver-focused research study or educational support group, knowing how many unexpected benefits it brought the three of them.

Edna and Georgia got the chance to meet up after the Tele-STELLA study concluded.The Tele-STELLA Study is looking for caregivers.  If you would like to know more about the Tele-STELLA study, please visit our website: https://www.ohsu.edu/oregon-center-for-aging-and-technology/tele-stella-study, or call us at 503-701-8566.

Support is available. The best way to find someone who can team up with you is to call a local organization. In Portland, the Multnomah County Family Caregiver Support Program offers help and support, 503-988-3646. The Alzheimer’s Association can also be a great source of support, 800-272-3900. Oregon Care Partners offers free caregiver training (on-line and in-person), 1-800-930-6851.