Health care providers are often caregivers. We may serve as primary caregivers for people in our own lives or depend on caregivers ourselves. We may be the ones who get the call when a friend or community member is going through an illness.
Yet, in our role as health care professionals, we often forget that caregivers should be considered an integral part of the care team. Many times, we don’t fully recognize the important role of those who accompany the person to a visit, call to check in, or remain at home holding everything together. Taking time to connect with caregivers and to understand all that they are facing can be helpful to their well-being and the well-being of the person they care for.
Caregivers can play a critical role in assisting communication. This can include supporting adherence to the person’s wishes and goals and taking part in conversations about health decisions. As we do our best to center our care on what matters to individuals, the perspective of their caregiver is often an important piece of this. For example, some people make decisions about their health care on their own, while others want their caregiver’s input or may even want them to take the lead. Some want to share everything about their health with those close to them, while others do not. Asking questions like those in the Conversation Starter Guide can help identify what fits best for each person:
What is it like to serve as a caregiver for someone in your life with a serious illness? In honor of National Family Caregivers Month, we share stories from caregivers in their own words about their experience caring for important people in their lives.
- “When we inevitably die, we will have left our marks on the world.” Aisha Adkins writes about her own illness and her role as caregiver for her parents in Won’t You Have These Conversations With Me?
- “Have you ever felt guilty for being able to laugh, even when in the midst of excruciating despair?” Lynn Sherwood describes caring for her 25-year-old daughter through her death in Preparing for a Happier Ending.
- “We had a long tradition of sharing good, strong coffee in the morning.” Anne McCrary Sullivan remembers reconnecting with her brother, facing the complications of his substance use, and caring for him at the end of his life in Losing, Finding, and Losing Again.
- “Ours was a second marriage, and despite the deep affection Ken’s three adult children and I shared after 25 years, I was concerned about navigating communication with them at such a momentous time.” Jane Conrad writes about being her husband’s caregiver in In Search of A Good Death.
- “I think that the hardest part of being a parent to your parent is the emotional part.” Emily Ziegler shares what it was like to take care of her parents as a young adult in Hands of Love.
- “We hug often, watch the sunset, and thank God daily for our many blessings.” Heather English describes becoming a caregiver for her husband in This Is Our Life Now.
- “I see the pull in Eli to want to do things on his own.” Elizabeth Emmett offers tips on parenting a child with an illness in When to Step Back.
In addition, here are a few resources you may want to share with caregivers:
- 11 ideas for when someone is having a hard time talking about their wishes for health care
- A Guide to Supporting Others through a Difficult Diagnosis
- Mashed potatoes, Mozart, and McDonald’s: A health care provider’s tips for caregivers
- Tips for using respectful language
If we make time for caregivers and treat them as key parts of the care team, they can make a huge difference. They can provide insights into daily routines, symptoms, or values. They can also help design and carry out a customized care plan that supports adherence and better outcomes.
How we invite caregivers to be part of the team matters. We may need to ask them more than once or in different ways. We may have to explore changing the way we work or our policies. For example, some health systems have ended visiting hour restrictions for caregivers as a way to say clearly, “We want you to be here any time. You matter.
Together, individuals, their caregivers, and health care professionals can explore the What Matters to Me Workbook for questions and prompts to guide conversations about goals and preferences. This month and every month, The Conversation Project is here to support conversations about what matters to people living with a serious illness and those close to them.
For more resources on talking about what’s important to older adults, see How to Have a Conversation with Older Adults about “What Matters”: A Guide for Getting Started.
Want to keep connected to The Conversation Project? Sign-up for our newsletter(s), follow us on social media (Twitter, Facebook, Instagram, YouTube) download our conversation starter resources and feel free to reach us at ConversationProject@ihi.org.