Cancer Education Center

Welcome to the Slaggie Family Cancer Education Center page. Our goal is to empower patients and their supporters to become active partners in their health care by providing relevant information, increasing knowledge and learning from one another’s experiences. Follow the Cancer Education Center page and stay up-to-date as we post accurate and timely cancer-related information on topics such as cancer prevention, risks, treatments, clinical trials, end-of-life care, and survivorship. No matter where you are in your journey, we are here to help.

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Tue, Oct 15 4:35pm

Technology and Cancer

By Lonnie J. Fynskov, R.N., @lonniefynskov

shutterstock_427841137At work, I spend a good portion of my day on the computer. The last thing I want to do when I get home at night is sign on again. However, when I was one of the primary caregivers for a family member, technology became not only a time saver, but also an emotional support tool.

When my father-in-law was going through treatment for AML, he ended up being hospitalized about 100 miles away from his home community. Many of his long-time friends and distant family members were not able to travel to see him but were understandably concerned about his health status. This prompted tons of emails and phone calls asking for updates as well as wanting to express loving concern. After trying to keep up with these overwhelming communication requests, I finally set up a Caring Bridge site and sent the link out to a mass distribution list of family and friends. When returning home at the end of each day, I would take about 15 minutes and write a Caring Bridge entry that would include any new updates with the treatment plan, the highlights of the day and thoughts that my father-in-law wanted to share with all those who were offering support. The next morning, we would print off the new comments that had been posted, bring them up to the hospital room and read him the words of encouragement people had shared. It was a beautiful ritual…having an evening quiet time to reflect and share the important moments of the day, and the morning reading of well wishes and admiration for the way his life had made an impact on theirs. It felt healing and sacred for us as a family, and cathartic for me as the journal writer.

I have heard other ways that people have utilized technology when they are in a caregiver role. One person told me they used it to Skype or Facetime with distance relatives. Another caregiver said they would be lost without their health tracker tool for appointments, medication reminders, insurance, etc.

There have been times when I have complained about the seemingly constant need to be engaged with technology but I will also admit sometimes using technology means caregiver support is as close as our fingertips. Members of Mayo Clinic Connect find it helpful to connect with others caring for family members in the Caregivers group.

Are you using technology to help with all the demands of caregiving? What has been most helpful for you?

 

Hi @lonniefynskov Good post. During my years as a caregiver my wife and I often found technology to be a huge benefit to us. Mainly in that we could stay in far better touch and communication with her physician at Mayo even though we were several states away. Telemedicine was awesome for us, especially once my wife was prescribed home hospice and unable to travel.

While my wife was absolutely dead-set against sharing her disease journey in any electronic manner or platform in any manner, I did find Mayo Connect to be a solid support for me as a caregiver as I struggled with the isolation and depression that often accompanies the burdens of fulltime, primary caregiving.

That said, we also relied on some more old fashioned, if you will, methods. We found HIPPA to be a huge help. While often shrugged off or treated as merely a legal necessity by medical professionals, we found, by the appropriate naming of individuals on my wife's wife HIPPA forms, it made communications far easier, more fluid, and most important of all, far more consistent as our adult children and her primary care physician were able to get the exact same information I was getting. This was wonderful in alleviating the burden on me having to be the family communications hub for her medical condition.

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Wonderful insight about the HIPPA regulations! Thank you for sharing, Scott.

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