Aging with FA: Coping strategies for caregivers
Last updated Oct. 15, 2025, by Lisa Marie Basille
Friedreich’s ataxia (FA) caregiving can be rewarding, but it also comes with unique challenges, especially as your loved one ages.
You may notice that your loved one’s physical, emotional, and logistical needs are changing. You might spend a lot of time coordinating care, anticipating next steps, or managing daily tasks, while trying to provide emotional support.
These demands can be taxing, and it’s normal to feel a wide range of emotions, from worry and frustration to guilt or burnout.
Practical coping strategies can help you manage the emotional toll of caregiving, maintain your own well-being, and navigate the challenges of supporting someone with FA as they age.
Understanding the needs of aging adults with FA
It’s important to know that not everyone with FA will experience the same disease trajectory. There is simply no one way to determine how FA and aging will play out.
In general, however, people with FA will likely require a wheelchair within the first 10 to 20 years after diagnosis. As the disease progresses, it may become harder for people to move or breathe on their own.
Because FA symptoms affect people so profoundly, and because your loved one’s needs may change over time, you may spend a lot of time anticipating next steps, trying to show emotional care and support, or juggling tasks.
Put simply, caring for someone with FA can be tough, and that’s why you need support, too.
Managing the emotional weight of ongoing care
Supporting aging adults with FA can be challenging for many reasons. Some common emotional hurdles include:
- uncertainty around your loved one’s disease progression
- worries about the future
- the emotions around anticipatory and ambiguous grief
Beyond the emotional, there are also logistical challenges you may experience as well, including:
- care coordination challenges
- financial obligations
- limited time to tend to your own interests or social plans
- lack of access to adequate support
Caregivers and their families may feel a wide range of complex feelings, including guilt for experiencing burnout or even resentment. This is completely valid and normal.
Practical coping strategies for caregivers
When you’re caring for someone you love, you may find yourself wearing lots of hats. As you face ongoing physical, emotional, and logistical demands, adopting healthy coping strategies will help you in the long term.
From developing ways to manage stress to seeking the right support, building a tool kit can help build resilience.
Understanding FA caregiver burnout
Knowing the signs of burnout is important so you can take action. Caregiver overwhelm and burnout might look like:
- fatigue
- sleeping issues
- ignoring your own health issues
- emotional and psychological stress
Making adjustments to prevent burnout
Mental health for caregivers matters, too. Caregivers can ease daily challenges and protect their well-being by adjusting routines, asking for support, planning ahead, and managing their time effectively.
- Make small changes to your daily routine, such as setting reminders for medications or meal prep. This can reduce stress and make caregiving more predictable.
- Communicate your needs to people who can support you. Let friends, family, or healthcare providers know what support you need.
- Plan ahead. Anticipate appointments, medication refills, or potential flare-ups so you’re not scrambling in the moment.
- Break your tasks into small, manageable steps. Prioritize what’s most urgent and go from there.
- Schedule brief breaks for yourself to decompress and recharge. Meditate, stretch, take a quick walk, or read a book.
Building a sustainable support network
Research shows that caregivers who lack social support, or don’t spend time with their friends, report feeling more burdened by their caregiving work.
For this reason, it’s wise to build a community that will support you and your loved one with FA.
- Learn how to ask for help: Asking for help isn’t always easy. But you can start by asking for easy requests. When you do reach out, have a small list of requests available and ready so that you can communicate exactly what you need. Be honest about what you don’t need.
- Open up to family and friends. Create a community of people who understand and support you, and call on them for help.
- Split caregiving tasks with family. Decide who will be responsible for caregiving and which tasks. The National Institute on Aging provides a Coordinating Caregiving Responsibilities worksheet that may help.
- Embrace respite care for FA caregivers: Respite care provides short-term relief when things get overwhelming. This can give you time to rest, take care of your health, or do something fun.
Caring for the caregiver
It may feel hard to do, but prioritizing your own self-care is crucial. It helps you and your loved one with FA in the long term. This might look like:
- ensuring you are eating balanced meals
- keeping up with your own doctor’s appointments
- getting enough sleep every night
- destressing your everyday life
- embracing boundaries and saying “no” when you have to
In addition to self-care, seeking support is key, whether through therapy or a caregiver support group. Seek a therapist who specifically understands the unique emotional and psychological challenges of caregiving.
Plenty of resources are available to you, such as Give an Hour, which offers no-cost counseling to caregivers. The National Ataxia Foundation also provides multiple resources, including caregiver support networks and groups.
Remember, seeking help and prioritizing self-care is not a luxury — it’s essential to sustaining your ability to care for your loved one over the long term.
Friedreich’s Ataxia News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.
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