Carer wellbeing – Looking after yourself
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Learn how to look after yourself as a carer of a stroke survivor.
Carers are the unsung heroes of the health system. While the focus is often on the professional health system’s response to stroke, it is usually an unpaid carer who carries out the long-term work of caring at home for their whānau member.
Stroke happens suddenly and there is little that can prepare someone for the role of a carer. It is a role that can be rewarding and satisfying, however it can also be physically and emotionally exhausting.
We’ve created a guide to provide you with information about common challenges faced by carers of stroke survivors and some top tips to manage your wellbeing. You can find English and translated resources here: Free Resources
Common challenges
Caring can come with its costs. Carers typically face challenges such as:
· confusion about how to manage complex health issues
· grief over the loss of the person they knew before due to the physical, cognitive, emotional and behavioural changes they may have undergone as a result of the stroke
· changes to relationship dynamics
· feeling frustrated by the demands and expectations of the stroke survivor
· the loss of freedom and independence as the stroke survivor’s dependence increases
· uncertainty and loss of hope and dreams for the future.
Strategies to build resilience to achieve wellbeing
Resilience is the ability to bounce back – and move forward – during periods of change, adversity and stress. There is no rule book for building resilience. It is a skill that can be learned and cultivated over time, building on the unique strengths we already have. It can decrease the burden and distress that can be associated with the carer role and helps us maintain our optimum wellbeing.
Gain the knowledge you need to make good decisions and solve problems
· Building your knowledge about stroke can help you gain a sense of control and better equip you to solve problems.
· Over time, you become your own expert. You develop unique skills and strengths that work for your situation.
Embrace healthy thoughts to help you cope emotionally
· Accept the new reality. This decreases stress and gives you strength to take action. This involves accepting what you have lost.
· Practice gratitude. Acknowledge and celebrate the good things in your life. Developing habits such as keeping a gratitude diary, cherishing your friendships and noticing the natural world around you can help bring back a sense of control to your life.
Reach out for help and build positive support networks
· Be honest about your own limits of ability to care. Recognise your strengths but be prepared to ask for advice and support.
· Create positive support networks with whānau, friends, and professionals. Ask for specific help. People often want to help but are unsure what will be most useful.
· Take advantage of respite care, day programmes or companion services. Learning to let go and take time for yourself helps everyone.
Negotiate your relationship with the person you care for so that your role and needs are respected
· Communicate clearly with the person you are caring for so you understand each other’s needs to maintain wellbeing. It is okay to review and revise what your needs are over time – the nature of your relationship changes due to the stroke survivor being dependent on you for everyday activities. The stroke survivor may not always understand how demanding caregiving can be. This is often because of the effects of the stroke.
Stories
Hear from other carers of stroke survivors about how they adapted to maintain their wellbeing in our video below.
Getting help
If your stroke survivor's hospital team does not refer them to the services, they need to support their recovery, you can ask a doctor to refer you to additional healthcare professionals. You might do this if you need extra equipment or adaptations added to their home to improve mobility and safety, or rehabilitation help.
Our Community Stroke Navigator/ Kaiārahi service is also available for stroke survivors with complex needs. If you require a Community Stroke Navigator to provide more in-depth support to aid to their recovery, email help@stroke.org.nz or call 0800 78 76 53. Or you can call our National Office for more information on 0800 459 954.
Carer webinar
Through the experience and insights of other unpaid carers and our Community Stroke Navigators, webinars held by the Stroke Foundation in November 2020 provided tools and ideas to maintain your own wellbeing and deal more effectively with your role as a carer. Watch the recorded webinar below.
Further support and other useful links
· U.K.-based FutureLearn free mindfulness and wellbeing courses
· Ministry of Health: Search for ‘carer support’
· Mental Health Foundation: Search for ‘wellbeing’
· American Psychological Association: Search for ‘resilience’
· Ted Talk: Lucy Hone shares three secrets of resilient people: https://www.ted.com/talks/lucy_hone_3_secrets_of_resilient_people?language=en