How do we get to the heart of learning about the people we care for?  How can we understand what their unique needs and struggles are?  How do we create training programs that make an impact on the care that we provide?  How do we learn from family members?

Recently I had the opportunity to attend a seminar given by my organization, the Alzheimer's Resource Center.  Our Chaplin, Irena, organized the program with 4 members of her spousal support group and our music therapist.  Irena opened the program by describing her life's own journey, detours, challenges and triumphs.  She shared very personal examples of grief and loss.  As a group we then discussed how suffering challenges, changes and transforms us, which helps us grow in our compassion as professional caregivers.  She asked the 4 spouses, all of which have a husband or a wife with dementia, to describe their personal experiences.  The spouses offered very personal and honest reflections of their grief, confusion, and their feelings or experiences of the loss of the person they had married.  One wife explained that she had lost her "best friend" the person she counted on everyday as a support was now counting on her for the very basic of needs.   Each spouse offered description words such as isolation, trepidation, frustration, separation, resolution, validation, appreciation, and compassion to explain their experiences with the disease.  Their open, genuine and very transparent accounts of their feelings and experiences made me deeply reflect on how we educate our professional caregivers.  How do we share with our CNAs, Nurses, recreation staff and others the family members' challenges?  Do we focus only on the person with dementia or are we reaching out to understand the journey the family has been on with the disease?  How do we provide opportunities to learn as professional caregivers from family members?

I had some ideas from my own experiences and I am eager to hear your ideas, suggestions and experiences also.  I had a young resident with MS at a facility I worked in, he did not have dementia.  I asked him to come and talk to my CNA training class about his relationships with his caregivers and his personal experience of living in a nursing home.  Years later, the CNAs in that course reflected that hearing him speak was more powerful than the text book that they were learning from.  If you can find a resident or family member, that was a previous teacher or caregiver, they would make an excellent speaker at an inservice.  Moderated family panels, videos of personal stories and reflecting on our own personal grief experiences are other learning opportunities.  What ways have you seen to help professional caregivers understand the grief, loss and anxiety felt by family members?