Through my interactions with the diabetes community, I’ve had the opportunity to meet some phenomenal people who support those living with diabetes. We’ve featured some such people here on Discuss Diabetes, including Lorraine Sisto, Leigh Farber, and multiple members of our CDE* HELP Team. Today I’d like to introduce you to Dr. Amy D’Aprix, MSW, PhD, CSA. As the author of “From Surviving to Thriving: Transforming Your Caregiving Journey,” she is well-versed in the psychology of caregiving.
Dr. Amy specializes in gerontology, which is the study of the social, psychological and biological aspects of aging. “I started working with aging families almost 30 years ago,” she said. “I had always focused on it, but what enhanced my focus was when my mom had a massive stroke and I instantly became a family caregiver. I went into that situation with about 15 years of professional experience and found that it was incredibly challenging despite all that I knew professionally.”
Dr. Amy spent about a decade caring for her parents. “My mom lived almost eight years after her stroke and then my dad needed some care, so I got to put everything into practice in a big way,” she said. “My dad started needing help just before my mom passed. It could have been overwhelming, but I think by that time I had developed the skills of going the distance. My mom’s situation was so dramatic and she was very disabled. We got her back home after a year, which is amazing. It taught me that you have to set up a sustainable situation.”
Given the experience of caring for her parents, combined with her professional expertise, Dr. Amy recognized the challenges that others in similar situations may face. “I thought, we’ve got to make caregiving easier for people, because if I served as a caregiver with all this knowledge and experience and I struggled to do it with ease, then I can’t even imagine what caregiving is like for people who don’t have any background and are thrust into such a role.” This realization led her to compile a series of articles into her book, “From Surviving to Thriving: Transforming Your Caregiving Journey.”
In the book, Dr. Amy outlines four key areas where caregivers need support: information and education, services and products, emotional and family support, and legal and financial help. “As the caregiver, you try to stay somewhat balanced in each of those areas,” she said. “We don’t ever have all of it balanced, but if you’re not in crisis in those areas, the caregiving experience can be transformational. Wonderful things happen to people while they’re caregiving. They get to spend more time with their loved one. They get to look at their own life in a different way. I think it often calls forth our best qualities.”
She points out that the first area of caregiver support, getting information and education, can help people move out of the crisis mode that often occurs with diagnosis. “When you first get the diagnosis, there is the initial shock that can make it hard to absorb everything,” she said. “You need to seek out information about what the condition looks like, and how to manage it. That may change over time depending on what the disease is. You may need ongoing education about how to manage changing needs and behaviors. You have to try to adapt to the new normal.”
The second area of need is services and products to help the caregiver in a practical way. The key is to seek out services and products that might make you a more effective caregiver on a day-to-day basis, without expecting to handle every detail of care on your own. “That can include everything from homecare to Meals on Wheels to a dietitian’s services,” she said.
The third area of need for caregivers is emotional and family support. “It’s important to be very open about your needs and perhaps seek out support groups,” she said. “I encourage people to go for two reasons. One is, obviously, for emotional support, but beyond that, there’s such good information that people who are going through similar situations have; the tactical, on-the-ground resources that often professionals aren’t even in touch with.”
Finally, caregivers need to seek out legal and financial support, which can include securing Power of Attorney or Guardianship, becoming familiar with elder law, setting up trusts, and arranging for long-term assisted living care.
Dr. Amy’s latest endeavor is the Essential Conversations Project™. Together with another social worker, Resa Eisen, Dr. Amy is hoping to help families who are dealing with life transitions. “Caregiving families are dealing with life transitions that need family conversations,” she said. “But these conversations are hard to have. They need somebody who can help them facilitate the conversation surrounding topics such as what a diagnosis like diabetes is going to mean and where life is going to go.” Dr. Amy and Resa plan to start training facilitators across the country to assist families with these conversations this fall.
These caregiving insights make so much sense, yet may not be obvious “in the moment.” I appreciate Dr. Amy’s focus on proactively seeking out help and support, to ideally make things easier. Be sure to check back next week as she shares her thoughts on caregiver stress and how to build more joy into your life.
All the best,
Disclosures: Dr. Amy D’Aprix received no compensation for this post. All opinions contained in this post reflect those of the interviewee, and not of Sanofi US, its employees, agencies or affiliates.
*“CDE” is a certification mark owned and registered by the National Certification Board for Diabetes Educators (NCBDE). NCBDE is not affiliated in any way with Sanofi US. NCBDE does not sponsor or endorse any diabetes-related products or services.
Essential Conversations Project is the intellectual property of Resa Eisen.