We hear from carers on our Family Support Services, that it can be difficult supporting autonomy while ensuring their person’s safety, managing the daily impact of the ED on their person’s life, and thinking about the long-term care needs of their person.
What are the Challenges?
Carers shared about the challenges they experience supporting a vulnerable adult in this session of Conversations with Carers. Some of the main challenges included:
- Balancing safety with independence
- Person transitioning into adulthood
- Supporting someone for a long time
- Change in the carer’s role
- Trying to determine what are protective factors for their person
- Ensuring appropriate care
- Communicating with their person
- Not wanting to lose connection with their person
What’s Helpful?
Carers highlighted the benefit in supporting their person’s self-efficacy. This could involve encouraging adults to come up with their own ideas and take responsibility for their health, to strengthen confidence and autonomy. For instance, asking yourself questions like “what would my role be if the ED wasn’t here?” could be a valuable way to think through when to step back. Allowing the person to come up with their own decisions can often lead to positive and surprising initiative.
Role-modelling emotional intelligence can be very helpful when supporting a vulnerable adult with an ED. Expressing your own emotions, providing a safe space for theirs, and showing that you don’t have to be perfect can reduce the pressure your person may be feeling. Carers advise encouraging your person to identify, express, and manage their emotions by engaging in helpful coping strategies, which may be returning to activities they enjoyed before the ED.
Carers recommend thinking about how you are communicating with your person. If time together is limited, setting aside a specific moment to check in about their wellbeing can protect the rest of your time together for connection outside of the ED. If you live with your person at home, it might be helpful to think of alternative ways of communicating, such as leaving notes around the house or sending text messages when in-person conversations feel overwhelming.
If your role as a carer is changing, tools like the Decisional Balance (link to podcast episode) can help you reflect on the pros and cons of what you are doing to help your person. Other practical advice from carers is to try and have contingency plans, or a way for your person to signal that they need support. Another great idea is asking yourself questions like “what’s the worst that will happen if I don’t step in right now” to help ease your own anxiety around stepping back.
Finally, a resounding message from carers was to try to remain hopeful, even if you are supporting a person for a long time. Affirming any effort that your person makes, rather than focusing on outcomes, can help create motivation for change. Seeking out green shoots (any small signs of change or desire for change) can help to strengthen your person’s voice, to feel stronger to stand up to the ED voice.
