Open Meeting: On October 7th we hosted a meeting to share our experiences as family caregivers. A few themes emerged:
1. Family caregivers are invaluable resources as they hold the key to a patient's medical history
2. When entering hospital, bring a loved one or family caregiver; their presence and insight can help you through your experience
3. As family caregivers become more involved in caring for their loved ones, they not only require more support from the healthcare system, they want to be respected as a part of the patient's health team as well
The shared experiences of those who attended this meeting reinforced the endless compassion and determination that is characteristic of family caregivers. It was also revealed becoming a family caregiver is akin to assuming a full-time job. (And usually in addition to an existing job.) The role of caregiver, particularly for a patient with multiple chronic conditions, typically includes medication management, appointment management, wound or personal care, diapering, advocacy, emotional and psychological support... the list goes on.
It's most often spouses, partners or close family members who take on this role, and we consistently hear how rewarding it is to care for their loved one, and how grateful they are to be with them. But family caregivers are unpaid, often overworked, and many of them report negative effects on their mental and physical health. So, how can we help the helpers? What kind of changes would improve the experiences of family caregivers?
The points made during our conversation can be found below:
- Family caregivers are the gatekeepers of a patient's medical history
- Family caregivers have deep knowledge of a patient's condition - listen to them
- It would be helpful if family caregivers were given a summary of the treatment and or procedures done upon leaving the hospital
- Make medical records available electronically to the patient and family caregiver
- A principle in every hospital should be to listen and respect the voices of family caregivers
As we continue this important dialogue into the new year we invite you to join the conversation. Make your experience count.