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Sign upCaring for loved ones with ATTR amyloidosis
You know them best, so as a family member or friend, you are uniquely important in helping them navigate the road ahead. Being a loved one can be full of complex emotions, new responsibilities, and unexpected challenges. As you begin to take on new roles in your relationship, keep in mind some of these tips for providing the best care for your loved one, and for yourself.
Learn about ATTR amyloidosis. Empower yourself to have better conversations with your loved one, anticipate their needs, increase your level of readiness, and communicate more effectively with doctors
Plan ahead. Establish a routine and get on a schedule. Being organized will help prioritize tasks and ensure time for yourself
Advocate. Help your loved ones receive the answers, advice, and treatment plan they need by communicating their symptoms, concerns, and wellbeing to their healthcare team
Organize medical information. Keep your loved one's medical information, including symptoms and test results, up to date and well organized
Keep track of symptoms. It's important to monitor and write down your loved one's symptoms, even if they seem random or unrelated. If symptoms worsen, you'll be able to share a historical record with their healthcare team
Prepare for worsening symptoms. As ATTR amyloidosis progresses, symptoms can worsen over time, causing difficulties with everyday tasks like walking or holding objects. Preparing for these possibilities may help you and your loved one tackle new challenges as they arise
Taking care of yourself
Caring for a loved one with ATTR amyloidosis can sometimes come at the expense of your own well-being. Taking care of yourself is vital to maintaining your physical and emotional health, so that you can continue to provide the care your loved one needs. Here are a few self-care tips:
Keep up with your own healthcare. Don't lose sight of your own health. Keep up with your own doctor appointments, screenings, and medications, as your health is invaluable and important to your friends, family, and community
Understand your rights. Under the Family and Medical Leave Act, most employers are required to provide up to 12 weeks of unpaid, job-protected leave for family members who need to take time off to care for a loved one who is ill. Reach out to your employer to learn more about your rights and start the process for getting leave, if needed
Stay social. Give yourself a break every once in a while, which can help you to maintain a healthy balance. Set time each week to connect with others and do something that brings you joy
Accept help. No one expects you to accomplish everything on your own. By asking for help from family, friends, and other resources, you can improve your ability to provide quality care
Focus on your quality of life. Your physical, mental, and spiritual health all impact your overall quality of life. Make sure to eat right, get enough sleep, and exercise to reduce stress, boost energy, and improve the quality of care you provide
Sign up now
Receive a useful symptom tracker and ongoing support to help you navigate the road ahead.
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Receive a useful symptom tracker and ongoing support to help you navigate the road ahead.
