Today's guest blog is from the creative and compassionate mind of Elizabeth Elfenbein one of Caregiven's advisors. She is a caregiver, the Chief Creative Officer at Cherish Health, and the Founder of Caregivers Speak Up. Elizabeth is a creative innovator and leader with a relentless focus on what’s next in health.
Today’s healthcare communications focus on three stakeholders:
Communicating to caregivers generally occurs in much the same way as it does with patient materials, but I’m not sure this should be the case.
Caregivers need to be treated, too.
Although doctors treat patients, and payers make medicine available to patients, it’s the caregivers who truly take care of patients. Caregivers make doctors’ appointments and drive the patient to them, engage in treatment research, ask questions, seek out second opinions, care for the family and the household, boost patient morale, and so much more. So, it’s important that caregivers are educated in layman’s terms about the science of their loved one’s disease.
Of course, the focus of attention should always be on the patient. But there needs to be more than the usual support groups for caregivers; there also needs to be an understanding that they are suffering and struggling, too. After all, the caregivers are also battling their loved one’s disease, living with the condition, and experiencing much of the same traumas. They’re watching their loved one deteriorate and struggle before their very own eyes. And even though they’re living in the moment and accepting small victories (as in “at least she’s not experiencing liver failure”), they need the same level of care, love, and support.
The toll on the caregiver is both physical and emotional.
Caregivers shoulder a tremendous burden. They’re desperately trying to be the glue that holds the patient and family together. Some days they do it brilliantly; other days, they don’t know if they’re coming or going. Unfortunately, some aren’t capable of providing the time or emotional care required to keep order in a very chaotic time. The toll is equally physical; they can’t be at work and at the infusion center at the same time. Something has to give.
How can we support the caregiver?
What can we do to support the health and care time for the caregiver? It’s not as simple as “5 easy tips to help the caregiver.” But here are some things we can do:
Educate caregivers about their loved one’s disease in clear, simple terms
Set up technology-enabled platforms and tools through various applications and devices
Provide disease-specific communities and caregiver communities that help them feel supported both locally and online
Provide care and counseling to them when their loved ones are no longer here
Caregivers will experience a riot of emotions once the initial shock of losing their loved one occurs. Their daily care routine is suddenly gone, and they don’t have the responsibility or the emotional connection that was once part of their caregiving responsibility. And even though there may be a sense of relief that their loved one is no longer suffering, there will be a void. But it’s a void that could be filled by the right kind of empathetic communication. These could help them on the next phase of their journey, when they could be sad, depressed, and have their own healthcare issues to resolve.
Caregivers have health issues, too
Caregivers are often so busy taking care of their significant other that they can lose sight of their own health. Ultimately, when caregivers initiate their own healthcare, we need to drive them to doctors and specialists who can help them attain physical and emotional stability in their lives.
We need to remember that caregivers need care, too, and we can help make a positive impact on their health just as we strive to do so for the patient.