There are an estimated 7,000 rare diseases and each one takes its toll. The effects aren’t just felt by the person with the condition, but also on those who care for him or her. As many as 30 million Americans are affected by a rare disease or condition, and many of these individuals receive unpaid care from friends, family, and neighbors, according to the National Alliance for Caregiving.
That’s why acknowledging caregivers during the month of November is so important.
These often unsung heroes suffer along with the people they help. Typically a spouse, parent or other relative is the primary care partner. They take time from work and other activities in order to ensure the well-being of their loved one. Caregivers spend countless hours coordinating medical care, maintaining prescriptions, overseeing diet, therapy and so much more.
“The caregivers we’ve encountered in the rare disease community are very effective at advocating for their friends and family,” said C. Grace Whiting, J.D., Chief Operating Officer of the National Alliance for Caregiving. “These families, friends, and neighbors often email researchers asking for new biomedical research on their disease, they write comments to the FDA, and work within insurance and health systems to get access to care. We want to capture the power behind these families and articulate what they are doing so that they can serve as a model for caregivers in other communities.”
By championing their loved one’s rare disease, caregivers can even bring about new therapies and treatments. They often give voice to those who are too young or too weak to speak out for themselves. So this month, Patient Worthy is speaking up for the “rare carers” with 9 tips from CareGiverAction.org:
- Care and Care Alike: No one understands the ups and downs of caring for a loved one with a rare disease like another caregiver. Seek out groups in your community to give and receive some TLC.
- Fit in Fitness: Maintain a routine of physical activity. Find ways throughout the day to increase heart rate, stretch and flex.
- Accept Help: How often do well-intentioned friends and family ask, “Let me know what I can do to help.”? How often do you take them up on the offer? Develop a list of activities that you can delegate to others. Not only will it lift your load, it will also allow the helper to feel good that they are doing something positive.
- Learn to Communicate Effectively with Doctors: Medical lingo can seem like a foreign language. If there’s something you don’t understand, ask! If the physician seems short on time, ask to speak with the clinic coordinator, nurse practitioner or unit social worker. Find out how your loved one’s doctor(s) prefer to communicate (via phone, in person, or by email).
- Take A Break: Schedule time for yourself on a regular basis. Mark your calendar, get a sitter or ask a friend (see #3) to come by so you can take a walk, go to a movie, do some shopping, etc. Make sure you take longer holidays too — and leave the guilt behind. If you’re burned out, you won’t be an effective caregiver.
- Talk It Out: Caring for a chronically ill loved one can be emotionally draining too. Caregivers often suffer from depression and anxiety. Seek out a skillful therapist or spiritual adviser to help you navigate your feelings of frustration and grief before they take a toll on your well-being.
- Get Techie: Technology is there to help, too. There are apps for tracking prescriptions, doctors appointments, and health incident journals. Video and audio monitors can give you peace of mind.
- Stay Organized: It’s easy to get overwhelmed with bills, insurance, medical records and other files or papers. Keep a dedicated file to place all medical-related info. Plus, many physician’s offices and hospitals offer patient portals that retain copies of appointments, test results and more.
- Letter of the Law: Make sure you have the appropriate legal proxy, medical power of attorney, and other legal documents necessary for you to make healthcare decisions for your loved one.
