This week, we’re honored to welcome Denise Brown to our blog. Denise launched the popular site CareGiving.com in 1996 to help those who care for a family member or friend. The site features blogs by family caregivers, weekly words of comfort, daily chats, podcasts and free webinars. An invaluable community for anybody caring for a loved one, CareGiving.com holds one of the largest online libraries of caregiving stories.
Denise is here today to talk to us about the concept she spearheaded, The 6 Stages of Caregiving, and how best to communicate with a family caregiver in each of these stages.
1. On Caregiving.com, you introduce the concept of the 6 Stages of Caregiving. How did this idea come about?
After launching my website in 1996, I began to receive emails from visitors asking for help as they cared for a family member. I wanted to create an answer to their questions (Why me? Why now? What now?) that reflected the reality of a caregiving situation while also offering hope. I thought of the staging of Alzheimer’s disease and how that can give a sense of control to family members – they’re comforted that what’s happening is a normal process of the disease and empowered with information to be as ready as possible for the future. I decided to look at staging the caregiving experience in 1997. I first developed four stages and then ask for feedback from visitors to CareGiving.com. In 1998, I added two more stages. Over the years, I’ve updated and tweaked the concept based on my ongoing discussions with family caregivers. The concept became a book in 1999; I’ll release its eighth edition on July 1. The concept forms the foundation for the Certified Caregiving Consultant training program, which trains former family caregivers to effectively consultant and support current family caregivers.
2. Can you give us a quick primer on the 6 Stages of Caregiving?
The Caregiving Years describes the path that family caregivers take, from Expectant Caregiver, to Freshman Caregiver, to Entrenched Caregiver, to Pragmatic Caregiver to Transitioning Caregiver to Godspeed Caregiver. Most important, the stages–and their related Stumbles and Steadies–provide a map for family caregivers to navigate successfully through the caregiving journey. I encourage all professionals to watch the video series. Here is the first step.
“The Caregiving Years” is separated into six stages, beginning when you expect to care for a family member and ending about two years after caregiving ends. Because caregiving can be such a complicated experience, the handbook provides simple coping strategies, wrapped in a keyword and a purpose, to help in each stage. You gain a coping strategy at each stage, which you take with you into the next stage. Each stage also includes actions plans and a resource library.
We’re all Expectant Caregivers because we most likely will provide care for a family member at some point in our lives. When we first starting helping a family member, we’re Freshman Caregivers and we give ourselves permission to experiment. As Entrenched Caregivers, we focus on receiving help and support as the caregiving experience intensifies. When we’re Pragmatic Caregivers, we move into welcoming new perspectives about ourselves, our carees and our lives. Transitioning Caregivers allow the natural cycle of life and make the tough switch from doing to being. The last stage, the Godspeed Caregiver, is about treasuring our memories and our opportunities for the next phase of our life.
3. How can understanding the 6 Stages be helpful to professionals working with elderly clients and their families?
Throughout the caregiving journey, the role of family caregivers evolves and so should the services and the support they receive. The stages help professionals effectively refer family caregivers to products and services at the right time. In addition, an understanding of the experience changes the conversation between family caregivers and professionals. When the communication is effective, the solutions become more powerful.
4. How can you recognize which of the 6 Stages your client is in?
I chose names for the stages to help all of us identify where a family caregiver may be along the journey. The Entrenched Caregiver feels and struggles with the difficult emotions – guilt, anger, resentment. They feel tired and overwhelmed. They move into the Pragmatic stage when they no longer feel like caregiving causes a constant tornado in their lives. When a caree enters their end of life, then the family caregivers moves into the Transitioning stage.
Download now: The Caregiver Years Tip Sheet
5. You advise meeting each client at the stage he or she is in. What does that look like?
When we meet family caregivers where they are, we accept them. We don’t try to fix them because how they feel makes sense given where they are. We join them with support and acceptance and understanding.
6. Can you give us some tips on how professionals can best communicate with and serve their clients at each step in the six stages?
My best tip is to ask open-ended questions which avoids incorrect assumptions. When we remain curious as to what the experience is like for each family caregiver we encounter, we can make much more effective referrals.
When we work with Freshman Caregivers, we can give them permission to try a service to see if it works. If it doesn’t work, we can step in with other ideas with a calm demeanor which helps the family caregivers remain calm. We can remind them that trying is the goal because we will ultimately land on what will work.
When we support Entrenched Caregivers, we offer them comfort that they are doing enough and that we believe in them. We give them permission to use help, reminding them that a complicated experience like caregiving requires a team.
When we engage with Pragmatic Caregivers, we listen to their stories, we enjoy their sense of humor. They’ve adjusted to their caregiving experience and will want to tell us what they’ve experienced. We can ask about their own dreams and goals – what do they want for themselves in their future.
The Transitioning Caregiver will need reassurance that they have done all they can. Hospice will be an important referral that needs to be made as soon as it appears a caree has entered end of life. If the referral is too soon, that’s okay. Education about the end of life is key.
Our caregiving mentors come from the Godspeed Caregiver stage. We can provide opportunities for Godspeed Caregivers to share their wisdom and lessons learned to help today’s family caregivers.
What other insights or advice do you have about working with individuals who are in one of the 6 Stages of Caregiving?
The Entrenched Caregiver will be emotional and overwhelmed which may make it difficult for professionals working with them. When we give the Entrenched Caregiver a few moments to vent, we often can then move into communicating about what would best help them. When we let them vent without judgment, we give them a great gift – a way to blow off steam without guilt. Once they vent, they often lessen their own stress levels and then may be ready to discuss adding services and help.