“I’m so stressed caring for my parents! My brothers and sisters live out of state and I’m the main one caring for them.”
In primary care, we hear similar sentiments weekly from our patients. Over the last two years, the COVID-19 pandemic has turned up the stress of those in caregiving roles — disproportionately affecting women.
Fortunately, learning additional ways to plan and delegate can combat this caregiver burnout, prioritize the values of your loved one and better anticipate care needs. The analogy of having dinner can help with these goals.
Plan in advance
The food choices you make when hungry are often different from the choices you make with more time to decide what to eat. This may impact the quality of the meal: It’s too easy to reach for — and maybe finish — a box of cereal or even stale crackers when you are really hungry.
Planning ahead increases the odds that you’ll feel equipped and prepared when an unexpected medical event happens, just as thinking ahead increases the odds that you’ll eat a healthier, more satisfying meal.
Similarly, it’s better to make critical decisions about medical care before a medical crisis such as a COVID-19 infection, a fall or a repeat hospitalization. Thoughtful advance care planning gives the patient, caregivers and health care teams time to discuss goals, values and related plans for medical care. As a start, advance care planning can include completing advance directives and living wills. These legal instructions help with preferences for medical care if your loved one is unable to make decisions independently.
Living wills and advance directives are one way to share wishes, and work better when discussed as a family. In effect, these written instructions act like a “recipe” for care. You may remember the ease of recreating a familiar family recipe after years of preparing a favorite meal alongside a loved one. Compare this with following a written recipe without any guidance. While written documentation of a living will and advance directive are important, talking about wishes improves critical understanding of your loved one’s wishes.
Have frequent, casual discussions
If you’ve lived with someone, you’ve likely heard this question many times: “What do you want for dinner?”
To decide, you probably consider your current cravings, what you’ve eaten recently and even bad experiences from less tasty meals. Likewise, you may be able to predict foods your partner or other loved ones will like — even as their preferences change over time. This is because you’ve casually talked about likes and dislikes and witnessed their eating habits many times.
When it comes to end-of-life care, it is vital for your loved one to share their preferences. You can ask questions such as, “How would you describe a perfect day?” or “What was it like caring for your parents or guardians?” This may lead to discussions about both positive and negative experiences caring for other family members in the past.
Your loved one may share health-related fears and worries, perhaps about pain, loneliness or living independently. It helps to explore these important and sometimes difficult, topics like end-of-life priorities and quality of life over quantity — or living comfortably versus simply longer.
Early and frequent discussions can begin at home and continue with your health care team. This can line up the wishes of your loved one with the plan of care by the health care team.
One way to keep talks informative yet casual is to encourage storytelling. For example, if a loved one describes the memory of reading books to a bedridden parent, this may influence the kind of tender care desired in the future. A loved one’s description of a parent that became more forgetful with frequent falls may highlight a specific fear and anxiety about changes in cognition and strength over time. Hearing their stories can create a better picture of a loved one’s desired care over time.
Invite more people
Dinner is usually better with thoughtful, helpful guests at the table. Likewise, caregivers benefit from having a supportive team.
- Invite medical professionals. Explore home care resources such as nursing, physical therapy and caregiver respite. This expanded health care team can act more like an extended family. Additionally, team members may help decide when it’s best to move your loved one to increase caregiver support, or transition to palliative or hospice care. In addition, you might talk to your own primary care provider for suggestions on how to better manage stress, which is common among caregivers. Reliable communication with your entire team may improve peace of mind for you and your loved one.
- Invite family and friends. Are you the official surrogate decision-maker on the advance directive? Ideally, all relatives should hear the stated wishes of your loved one while he or she has the capacity to express them. This can make your role easier if a time comes when your loved one is no longer able to share these wishes. Also, frequent group family discussions may mitigate misdirected feelings of anger, jealousy and guilt that can occur among even the closest of family members. Additionally, start a discussion with your loved one about the benefit of having a separate financial power of attorney. Consider delegating some aspects of care to other family members — such as laundry or organizing medications — to prevent caregiver burnout.
Having friends, family and health care team members at the table can greatly ease caregiver stress and tension around end-of-life care. Hopefully, these caregiving strategies give you more enjoyable time with your loved one — perhaps around the dinner table.
The upcoming holidays are a great time to begin or continue these important discussions with family members in person or through your favorite video conference service. For gatherings, please follow recommended CDC precautions, including vaccination, masking, and handwashing. May your advance care planning discussions bring you ease of mind and a greater sense of closeness with your family!
For help in having advance care planning discussions:
- A conversation starter guide from The Conversation Project
- A serious illness workbook from The Conversation Project
