I used to listen to the Satellite Sisters on the weekends when I shuttled my kids to and from their activities.
It’s a radio talk show hosted by five sisters (yes, they really are sisters) spread across the globe. Admittedly targeted toward a female audience, they’ve always reminded me of the relationship with my sisters–easy and open and close–although spread out geographically.
This week I felt a bit like a Satellite Sister. I had merged my sisters’ calls on my iPhone – one incoming from California one incoming near Chicago. Our focus of the conference call was to find answers about mom’s condition.
What was going on with mom?
In her cyclical stays in hospitals and rehab centers and, most recently, a skilled nursing facility, we felt that no one “owned” my mom’s case. Her primary care physician, who gave the orders to the facilities, hadn’t seen her in months, and her condition had changed dramatically – which is what concerned us. What was going on with mom?
Dad had just informed us that he was planning on bringing my mom home from the nursing facility that we thought would be a permanent placement for her. He said he was unhappy with the care and he, admittedly, missed her.
We knew Dad had made this decision based more on his heart than his head, and who could blame him after 60 years of marriage? But we were worried. How would he care for my mom?
Each of us sisters around the conference call had our computers poised in front of us. Weeks earlier we had been similarly gathered around our phones and computers searching for skilled nursing facilities, reading reviews and ratings.
Searching “Parkinson’s” and “dementia”
This day we searched “Parkinson’s” and “dementia.” We took turns reading what we found as we sifted through the myriad of commercial sites, and we shared the web addresses we found most helpful.
With the help of The Parkinson’s Disease Foundation, The Michael J Fox Research Foundation and The National Institute of Neurological Disorders and Stroke, we collectively identified the stage mom’s Parkinson’s had advanced to …and then we decided to read about Hospice.
A nurse had brought the organization to our attention and, although we had all heard of it, we had never had to consider it for a family member. So we read aloud the frequently asked questions – exploring the site “together.” It helped us face the difficult realities of mom’s condition, talk through our next step, and moved us from frustration with my dad, to empathy and finally, to action.
We knew what questions to ask
We divided up the next day’s phone calls – to the skilled nursing facility, to the primary care physician, to the home care organization. After our e-sister session, we knew what questions to ask, how to frame our concerns and the language to use to describe mom’s symptoms.
The exercise helped us become more informed so we could be of more help to my dad. By noon the next day, we had scheduled two different home assessments and had talked with the doctor who seemed to appreciate the information we gathered as we sought his advice.
It’s an ongoing process, and I’m sure it won’t be the last time we have an e-sister session.
Beyond educating ourselves and helping our dad, our e-session strengthened our connection as sisters, as daughters … who struggle to care for our aging parents from a distance.
The value of credible sources
I am inspired by e-patient Dave and his commitment to take charge of his own health. I am inspired by the bloggers on e-patients.net (the site for the Society for Participatory Medicine). But the reality is, my aging parents don’t have the technical know-how or stamina to advocate for themselves.
It’s a good reminder to those of us in hospitals and clinics that there are many “accidental e-caregivers” who are online with a willingness to help, but a lack of medical expertise.
I’ve blogged about this before, but after my e-session with my sisters, I want to again encourage hospitals and clinics to consider being curators of medical websites and social media sites for your patients.
Direct them to credible sources and helpful chat rooms, Facebook pages or YouTube channels. Those e-sisters (and e-brothers, e-sons, e-daughters and e-friends) will appreciate your guidance as they try to help their loved ones access the best care.
How we help
Hive Strategies helps health systems create HIPAA-compliant online communities for better health, lower costs and greater loyalty.