Taking care of a loved one means being an advocate for both of you.
While caregiving comes with many rewards, the emotional or physical impact on people who give care is also undeniable.
According to the Mayo Clinic, caregiver stress is common: “It is natural to feel angry, frustrated, exhausted, alone or sad.”
To prevent burnout or health impact, caregivers need to be well versed in advocacy—both for their own wellness, as well as to provide the best care they can for their loved ones.
Consider these five tips for caregiving advocacy—for both yourself and your loved one.
Communicate often
Advocate for yourself
Caregiving advocacy means communicating well with your loved one, in addition to others involved in care, says the Centers for Disease Control and Prevention.
“Understand the needs of you and your family, and work together to make good choices about housing, schools, health services and more,” the CDC recommends.
Schedule check-in times to ask about things that are or aren’t working. Allow everyone to speak for themselves in these conversations. If conflict arises, focus on what you have in common: your loved one’s health and happiness.
Ask for help when you need it. Tell your employer about your situation if it might impact your work.
Advocate for your loved ones
Communicating with your loved one’s wellness in mind often means empowering them. Help them celebrate milestones and speak in terms of abilities, not inabilities.
Your loved one may not always have the energy to communicate effectively. Talk with them about how you can be helpful in the communication they have to do regularly—with their medical team as well as friends and family.
Understand their health—which for many people with a rare disease changes from day to day. It can have a big impact on energy level, mood, irritability and communication.
Put health first
Advocate for yourself
As a caregiver, you may struggle to find the time or energy to think about your own health—after all, you’re spending a great deal of time thinking about someone else’s.
According to the National Institutes of Health, a variety of health issues have been linked to long-term caregiving, including depression and anxiety.
Be in tune with your health. Take breaks and maintain a good diet. Exercise as much as you can. Prioritize sleep.
Watch for signs that something isn’t right, like changes in weight or sleep patterns, or decreased energy, patience or interest levels in beloved hobbies. See your physician if these signs are present. Especially if physical tasks are involved in caregiving, seek medical attention at the first sign of injury.
Advocate for your loved ones
Building a good relationship with medical professionals can offer challenges, but is especially important for giving effective care. According to the National Family Caregivers Association, benefits include: better patient care, less caregiver stress and illness, better use of doctors’ time, reduced health care costs and more satisfaction all around.
They suggest writing questions down before appointments and speaking clearly and concisely. Scheduling consultation appointments on top of medical ones can give you or your loved one and the medical professional more time to talk.
Be organized. Pick what works best for you—a binder, to-do lists, online calendars, file folders—and stick to it. Keep track of all medical contact info, appointment dates, a log of health-related events, healthy recipes and more.
Seek resources
Advocate for yourself
Educating yourself is one of the most important parts of caregiving advocacy. According to an article in Pediatric Neurology, a caregiver’s access to more accurate information can mean he or she feels less anxiety.
Knowing certain weather or foods cause symptoms to worsen can help in organizing planned outings.
Understand the progression of a disease to help alleviate anxiety related to unpredictability. Learn coping exercises or routines known to help with your loved one’s illness.
Find ways to get involved with other caregivers.
Advocate for your loved ones
Mayo Clinic suggests support groups when your loved one desires connections to others outside of their immediate circle or those who are facing similar challenges.
Benefits of support groups include gaining a sense of control, a better understanding of your loved one’s situation and even practical advice about treatment options.
Connect your loved one with trusted resources such as the National Institutes of Health. Rareconnect.org or rareshare.org are good places to start for online social communities.
Self-care
Advocate for yourself
A 2006 study in the New England Journal of Medicine found a link between spousal caretaking and a lowered immune response. Caregiving’s added stress and changes in social or financial support and free time were likely causes, the authors said. Take countermeasures to stay healthy.
Take time off when needed. Don’t neglect your friends and family. While caregiving may impact your social life, make sure socializing is still a regular part of your life.
What are your favorite hobbies? What do you love doing? Keep these things in your life. Laugh often. And of course, seek outside help as needed.
Advocate for your loved ones
Just as taking time to care for yourself helps you as a caregiver, self-care can help your loved one. Both are part of caregiving advocacy.
You likely already know your loved one well enough to recognize when they may be having a rough time. If you don’t know how to help in these moments, ask them.
Allow them to do as much as they want or are able to do for themselves. And don’t forget the importance of simply listening—being a reassuring, supportive presence. Or, find out what kinds of activities make them feel cared for. Try social events or special outings and foods.
Focus on hope
Advocate for yourself
A study published in a 1992 Journal of Social and Clinical Psychology found higher levels of hope in long-term caregivers is linked to many benefits, including less burnout.
Maintain hope by taking on one issue at a time. Focus on however much you can handle. If you are struggling with hopelessness over a financial concern, for example, start by setting aside five minutes each day to research and explore solutions or reach out to someone who might be able to help.
While some days are more difficult than others to maintain hope, one ongoing strategy to remember is to remind yourself why you’re doing what you’re doing.
Advocate for your loved ones
Hope is linked to better health. It is also a dynamic part of any diagnosis. Some days or years will present different causes for hope. Maybe there’s hope for better treatment. Maybe it’s simply a new, fun activity coming up.
You can help in small ways by incorporating things like music, writing, meditation, exercise, social activities, sunshine and more into daily routines.
Watch for signs your loved one might be struggling, including depression, bitterness, hotheadedness and denial. Seek professional help in coping with these issues as needed.
By maintaining hope, caregivers can demonstrate the importance of living your life, one day at a time.