Caregivers play a crucial role in the lives of people with chronic illness like transthyretin amyloid cardiomyopathy (ATTR-CM). Some are heavily involved in obtaining a correct diagnosis, managing medications, monitoring symptoms and coordinating medical appointments, while others might provide a listening ear and emotional lift. No matter your needs, having a trusted caregiver by your side during medical visits is a vital source of support.
What is the role of an ATTR-CM caregiver?
Caregivers usually don’t choose their role, but take it on out of necessity to support a loved one who falls ill. In ATTR-CM, caregivers navigate the challenges of daily life as the disease limits abilities, and try to ease the symptom burden of ATTR-CM for their loved one and maintain their quality of life. Often, caregivers become advocates for better care or treatment. As a partner and companion, they may also provide physical support and manage nutrition, logistics, finances, insurance and social life.
It is a crucial role with many responsibilities that can take its toll, with caregivers often feeling overwhelmed.
Read more about ATTR-CM signs and symptoms
How can a caregiver give support during a doctor visit?
Your caregiver can be a valuable source of support during doctor visits. Whether you need help scheduling and getting to your medical appointment or just want a hand taking notes, they can make sure you get the most out of your visit.
Before the appointment
Preparing for your appointment together with your caregiver can help lift some of the stress off your shoulders. Your caregiver can:
- Confirm the reason for the visit and collect all relevant supporting details, such as recent changes in symptoms or side effects of treatments.
- Help you write a list of questions you want to ask about symptoms, treatment, disease progression, new clinical trials or new potential therapies.
- Collect and organize any recent results from blood tests, ECGs or chest X-rays.
During the appointment
It’s easy to forget a detail or get confused by medical jargon. By actively participating in your appointment, your caregiver can help ensure nothing gets overlooked.
- Request your caregiver help ask questions and insist on clear answers.
- Ask your caregiver to jump in anytime to give further clarification or to add extra details you may have missed on symptoms or quality of life.
- Ask your caregiver to take detailed notes of what your healthcare provider says, for you to refer to later.
After the appointment
A caregiver can offer support after your visit, too.
- Your caregiver will no doubt have insights to share with you — ask them to share their thoughts about your visit.
- Make sure you are on the same page, comparing your recollections with their account.
- Plan the next steps together, so your caregiver can follow up on medical tests, prescriptions or any other changes in your care.
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