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Hereditary transthyretin‑mediated amyloidosis (hATTR) is a rare genetic disease. Because it can affect many parts of the body — including the nerves, heart, digestive system) — hATTR amyloidosis can pose various challenges that require caregiving support. In hATTR amyloidosis, misfolded proteins build up over time, which means that caregiving needs will likely increase as the disease progresses.
If you’re caring for a loved one with hAATR amyloidosis, there’s a good chance you don’t know anyone else in your position. But that’s not to say you should take everything on by yourself. Caring for yourself is not a luxury; it’s a necessity to sustain this important job. With the proper planning and resources, caregiving for someone with hAATR amyloidosis can be a little more manageable.
Caregiving is a demanding role, both physically and emotionally. That’s why caregivers need support too. Here are some tips to streamline your caregiving duties and get the help you need to care for your loved one.
Educating yourself on your loved one’s condition can help you feel more confident about managing their care. You can build your baseline of knowledge by reading up on hATTR amyloidosis through trusted sources.
For example, the Amyloidosis Foundation has loads of free resources on its website, including brochures, webinars, and videos to learn more about the disease. There’s also a specific section for Caregiver Resources that you might find helpful. Use these resources to understand the latest treatment options and the typical patterns of symptom progression so you know what to watch out for.
Another valuable opportunity to learn more about your loved one’s condition is during their doctors’ appointments. Preparing for appointments by writing down your questions in advance can help you be ready when you’re in the exam room.
During appointments, ask your loved one’s healthcare providers to explain different aspects of the disease, including treatment options and how it can impact a person’s daily life.
Before you leave, clarify the potential side effects of any new medications and identify the best person on the care team to call with urgent, nonemergency questions.
Caregiving can be complicated. Getting some supplies can help you stay calm and organized.
To start, a caregiving binder is a great place to store important documents, including prescriptions, educational materials, appointment cards, and notes.
Use the binder to track your loved one’s key data like:
Additionally, write down any questions that you have for their healthcare providers. Then bring your notes to medical appointments so you have them handy when you need them. You can also store and keep track of any advice or instructions you receive so you’ll have it to reference in the future.
Another basic tool to stay on track is a pill organizer. Keep your loved one’s hATTR amyloidosis prescription medications and any supplements in a container with a compartment for every day of the week. Many pharmacies and doctors’ offices can provide pill organizers for free.
Always confirm with the hATTR amyloidosis care team before mixing supplements with prescription medications, and check expiration dates regularly, as polypharmacy (taking five or more medications regularly) can be complex and risky.
Keeping a consistent schedule can help you and your loved one know what to expect day to day. For instance, waking up and going to bed at the same time every day helps establish a rhythm that promotes good-quality sleep. Regular mealtimes, daily physical activity, and scheduled downtime can also be positive habits you both look forward to.
Setting alarm reminders on your phone can alleviate some of the mental load associated with caregiving. Simple reminders, like ordering a prescription refill, can save you a lot of stress later. You can also set reminders for healthy habits, like getting to bed on time and taking a walk. This can help you prioritize your own health and well-being. After all, taking care of yourself is vital when you’re responsible for caring for others.
Depending on the symptoms they’re dealing with, people with hATTR amyloidosis may have a few different medical professionals they need to see, such as a neurologist for nerve issues and a cardiologist for heart health. But doctors’ appointments often run behind schedule. Having too many appointments in the same week can be draining and stressful, especially when they’re back to back.
Instead of rushing from one healthcare professional to the next, space out appointments when you can. Some issues may be managed through telehealth or a phone call to the care team rather than an in-person exam. Don’t be afraid to ask for flexible options that make care more accessible.
Remember to make time for fun and relaxation. Schedule something you enjoy, especially if you have a particularly difficult week of caregiving ahead. Make time for other people in your life, including those who lift you up and help you feel positive. Sometimes, even just giving yourself five minutes of quiet time for deep breathing or an extra-long shower can give you a boost to recharge.
One of the hardest aspects of caregiving can be feelings of isolation. You can avoid being an island by sharing your caregiving role with family and friends. Let others know about your responsibilities and give them opportunities to pitch in.
It’s easy to get used to doing everything yourself. But that’s not a sustainable strategy. Take a few minutes to think about simple tasks that you could pass to a family member or friend.
For example, consider whether you could trust someone else to:
Keep these ideas in mind so you have a real answer the next time someone offers to help out.
If you don’t feel like you have a strong enough support system, get creative about outsourcing your duties to avoid feeling overwhelmed. For example, take advantage of services like grocery delivery or pickup. Consider hiring help for tasks that are particular pain points, whether it’s mowing the lawn or doing the laundry.
If you can’t afford professional assistance, you may be able to find a college or high school student who can take on specific tasks for a reasonable price. In addition to hiring local help, investigate local aging or disability services offered by nonprofit or government agencies, which may offer subsidized respite care or home health aides.
You don’t have to take this journey alone. There are networks and resources specifically for hATTR amyloidosis caregivers that you can access.
Some helpful resources to check out include:
Additionally, there are plenty of caregiving-focused amyloidosis events available virtually and in person. Try to attend one if you can. Connecting with others can help you feel less alone and give you renewed energy for your important role as a caregiver.
On MyAmyloidosisTeam, people share their experiences with amyloidosis, get advice, and find support from others who understand.
Are you a caregiver for someone with hAATR amyloidosis? Let others know in the comments below.
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