Key takeaways

  • Hereditary transthyretin amyloidosis (ATTR-CM) causes protein buildup in the heart muscle, leading to symptoms like shortness of breath, irregular heartbeat, and swelling.
  • Caregivers can find support through organizations like the Amyloidosis Research Consortium, as well as federal programs such as the National Family Caregiver Support Program and the Family and Medical Leave Act.
  • If you’re a caregiver, it’s also important to prioritize your own health and well-being. You may find it helpful to stay physically active, set realistic expectations, use respite care services, and join a support group.

Supporting someone who lives with a medical condition can be rewarding but time consuming. Even when you’re caring for someone else, it’s important that you take time for self-care.

If someone you care for has transthyretin amyloidosis (ATTR-CM), it means that a protein called transthyretin (TTR) is building up in their heart muscle where it should not be. Over time, protein deposits can stiffen the heart, reducing its ability to pump blood.

There are two types of ATTR-CM. Hereditary ATTR-CM (hATTR-CM), also called familial ATTR-CM, occurs when someone inherits a gene that causes the condition from one or both of their parents. Wild-type ATTR-CM occurs when someone develops the condition over time, without inheriting the gene.

People with hATTR-CM may experience symptoms that affect their everyday life, including:

  • shortness of breath (either during activity or while at rest)
  • fatigue
  • irregular heart rhythms
  • increased heart rate
  • heart palpitations
  • swelling in the lower legs, ankles, or feet
  • respiratory symptoms such as chest congestion, wheezing, or coughing
  • abdominal bloating or a feeling of fullness

You might find that you’re neglecting your own needs while caring for someone else. But to be the best possible caregiver, you also need to take care of yourself. Here are 7 ways to do so.

Support groups are a great place to meet people who are going through similar caregiving experiences and to share knowledge and resources.

The Amyloidosis Research Consortium (ARC) is a nonprofit organization that has multiple resources for people with ATTR-CM and their caregivers.

The ARC lists the following organizations that offer support groups and other resources for caregivers:

To be in the best place to support and care for someone else, you need to take care of your health.

Because of busy work and family schedules, caregivers may be less likely to attend preventive health checkups and practice self-care. But neglecting your needs can increase your risk of experiencing physical and mental health challenges.

By keeping up with appointments and seeking medical advice when you need it, you’ll give yourself the best chance of fulfilling your caregiver responsibilities.

You may be eligible for state and federal programs that can support you on your caregiving journey.

National Family Caregiver Support Program (NFCSP)

The NFCSP is a government program that provides grants that help family and informal caregivers care for someone at home for as long as possible.

The NFCSP offers:

  • information on services available to caregivers and how to access them
  • individual counseling
  • support groups
  • caregiver training
  • respite care

To be eligible for these services, you must be:

  • an adult family member or other informal caregiver caring for someone at least 60 years old
  • an adult family member or other informal caregiver caring for someone of any age who has Alzheimer’s disease or a related condition
  • a non-parent caregiver, at least 55 years old, caring for one or more children under age 18
  • an older relative, including a parent, at least 55 years old, caring for an adult between the ages of 18 and 59 with a disability

Family and Medical Leave Act (FMLA)

The FMLA is another program that may offer some reassurance for caregivers.

Under the FMLA, if you’re eligible, you are entitled to unpaid leave to care for a family member, and your job will be protected. The FMLA entitles you to 12 workweeks of leave in a 12-month period to care for:

  • a child, spouse, or parent who has a serious health condition
  • a child, spouse, or parent who is a member of the military, is on covered active duty, and has a qualifying need

If you’re the spouse, child, parent, or next of kin to someone in the U.S. military, the FMLA entitles you to 26 work weeks of leave in a 12-month period to care for a covered service member with a serious injury or illness. This is also known as military caregiver leave.

Permission to be healthy and happy as a caregiver

It’s important to remember that you’re allowed to be healthy and happy while caring for someone else. According to the American Heart Association (AHA), as a caregiver, you have the right to:

  • Eat well, exercise, and get enough rest while reminding yourself that you are not being selfish. These habits will help you stay healthy so you can provide the best care.
  • Recognize your limits and ask for and accept help when you need it.
  • Look for and use community caregiver resources.
  • Do some things just for yourself and maintain a life outside of caregiving.
  • Sit with your feelings and express anger, sadness, and other difficult emotions sometimes.
  • Stay strong and not allow anyone to manipulate you through guilt, anger, or anxiety.
  • Receive kindness, consideration, affection, forgiveness, and acceptance from the person you care for and offer those qualities in return.
  • Take pride in caregiving and recognize that it takes courage to care for someone else.
  • Protect your right to make your own life, so you have a solid foundation when your caregiving responsibilities end.

Incorporating movement into your daily caregiving routine can help support your physical and mental well-being.

There are many convenient ways to stay active as a caregiver, including some that may not seem like exercise, such as gardening and housework.

Joining an exercise class can be a great way to spend some personal time, and if you choose a yoga class, it may also help with mindfulness and mental health.

At times, you may feel overwhelmed when caring for someone. But staying focused on the things that are relevant and within your control can help you maintain a calm, considered, and caring mindset.

Practical strategies such as these may help you manage multiple obligations while still making time for yourself:

  • Set realistic expectations: Know that you can’t do everything yourself. Prioritize the most important tasks each day, and ask for help if you need it.
  • Consider respite care: Respite care can give you a break from your care duties and provide some important self-care time. Many organizations offer respite care services to caregivers.
  • Manage your time and stick to a schedule: Make sure you set dedicated time for caregiving, personal tasks, and rest. Sticking to a schedule will ensure that your time is well balanced.

Look out for these signs of caregiver stress, which may indicate that you need to devote some time to rest and self-care:

  • exhaustion, overwhelm, or anxiety
  • impatience or a short temper
  • feelings of loneliness, isolation, or disconnection from others or the outside world
  • sleep problems
  • sadness, hopelessness, or loss of interest in activities you usually enjoy
  • frequent headaches, other pain, or other physical symptoms
  • lack of time to exercise or prepare balanced meals for yourself
  • lapses in personal care and hygiene, such as missed showers
  • misuse of alcohol, prescription medications, or other drugs

Support groups can provide the most up-to-date resources and information on ATTR-CM and allow you to connect with people who understand the experience of caregiving.

Groups usually meet on a specific schedule, so you’ll need to plan ahead to ensure that you can attend regularly and maintain those connections.

You can also make time for visits with friends and family, but again, planning is essential. You might need to arrange for someone to take over your caregiving duties during these visits.

When you’re a caregiver for someone with hereditary ATTR-CM, you may find it hard to set aside time for yourself. But prioritizing your needs in addition to those of the person you care for can help you stay physically and mentally well in the long term.

Ultimately, taking time for yourself will help you and the person you care for lead happier, more fulfilling lives.