Longer term wellbeing for people who support PDAers

In survival mode, long-term self-care often feels impossible. But over time, without small investments in your own identity, relationships, and rest, you can lose touch with yourself — and eventually burn out.  

Long-term care doesn’t have to be time-consuming or big commitments. It just needs to be consistent, meaningful, and yours.  

 1. Maintaining one or two core friendships

Social connection is vital to emotional health. Even if you can’t attend gatherings or meet in person, sending a voice note, having a 10-minute call, or exchanging honest messages with a trusted friend can be a lifeline.  

Try investing in depth, not breadth – one safe friendship can do more to heal a frazzled nervous system than a dozen surface-level ones.  

2. Moving your body every day

Exercise helps regulate emotions, improve sleep, and reduce stress. It doesn’t have to be a class or gym session. Some simple and accessible ideas include:  

• stretching before bed  

• a short walk with or without the person you care for  

• free online movement videos (e.g., yoga, tai chi, dance)  

Consistent, gentle movement is more powerful than intense exercise done rarely.  

3. Setting one goal that’s just for you

Finding something that is outside of the regular caring activities, and which brings you some joy or pleasure. It could be:    

• reading a novel, maybe aiming for a small number of pages each time. 

• planting herbs or flowers and watching them flourish. 

• trying out a new recipe or selecting a country and cooking a couple of traditional dishes from the region. 

• writing a poem or short story.  

Engaging with these types of activities can encourage focus on things other than the responsibilities of caring and re-ignite creative pathways.  They can keep a sense of self alive beyond the caring role.  

4. Asking for help—even small help 

Long-term sustainability means not doing everything alone. Try reaching out to family, friends, support groups, or community services. Even one hour of regular respite can make a difference over time.  

Carers don’t have to do it all alone. Asking for and accepting support is strength, not weakness. It can sometimes be difficult to find the right person or service to provide that support but don’t give up, keep asking. 

5. Engaging with other carers

Connecting with others who understand can reduce isolation. Some places to look include:  

• local carer centres or peer groups. 

• online forums or social media spaces for carers.  

• events or workshops (in-person or virtual).  

Attending everything isn’t necessary — just knowing these spaces exist can offer comfort.  

6. Looking forward to something

Even if it’s small, having something to look forward to—an afternoon out, a holiday or short break a year from now, or even some respite time alone—can remind us that there are times beyond the immediate demands of the caring role.  

Hope is a powerful form of care, too.  

If you’re looking for ideas that actually help, our parent carer training could be for you. It’s built by people with lived experience, and is full of practical tips. Families tell us that after our training they better understand what is going on for their child, why they are struggling and what they can do to help.