Being in a caring profession as a social worker and caring for a child/young person with a long term illness as a carer are two very different experiences and my professional experiences didn't really prepare me for the personal challenges to come. It has been a steep learning curve, one where I’ve had to be ready to change and adapt the way I think and care. From a caring nurturing mum and lead decision maker, to one who enables and empowers independence. My tips on being an effective carer are based my experiences of this ever evolving role, but also on how to look after yourself and equip yourself to do this role effectively.
1. Grieving, losses and changes
It’s ok to grieve losses and changes.
The world around us often makes us compare and think about what’s ‘normal’. It’s ok to grieve differences regarding societies ‘normal’ but adapting and accepting your ‘normal’ is invaluable to your families wellbeing and the marathon you're in
Support from others in the same position can be encouraging, as empathy and experience can help.
Most specialist teams in hospitals are multi disciplinary and work alongside other professions, providing help with transition, change and networking ( eg. mental health, physiotherapy, social services etc).
2. Taking care of yourself as a carer.
Managing your mental health and being mindful of the mental health of your young person is a significant challenge for most carers. Being a carer can be isolating and filled with the pressures of balancing your needs with your child/young person.
Depression and anxiety are as significant for a carer as they are for the young person managing their illness. Being aware of this and recognizing that you both might experience these emotions but for different reasons is key.
Ensuring you are supported in your own right is important for your whole family's well being, and can significantly impact your capacity to care for your young person.
Examples of support could be from; Family and friends; charitable organizations; professional therapeutic interventions.
3. Information is power
It is always useful and empowering to find out information about your young persons illness, as this will help during appointments and claiming benefits/support.
Be careful web searches are not always beneficial and can misleading, misrepresent and cause distress. Ask your GP, health specialist or reputable charities about approved sites or nhs based information sources.
4. Empower and represent your Young Person
As an appointees it’s important to talk on behalf of our young people, but it’s equally important to allow them to talk and direct consultations as well. This applies to other aspects of their lives too, particularly in education.
Talk to them frankly about what they want and support them in perhaps writing a diary to help them effectively represent their views , but you don’t always have to be a constant ‘carer’ . Don’t disable them enable them, facilitate and empower.
5. It’s ok to ask for help
As parent carers we are incredibly self sufficient with an attitude that it’s easier to do it yourself, however you don’t always need to.
There are a network of charities, professionals, social care, and family who can help ( Direct payments and short breaks).
6. Respite and practical support
Taking a break from your caring role is a must. Making the time to regain your physical and emotional strength will help you cope and manage better.
Admitting you need help doesn’t make you a bad carer, it just gives you a little more energy for other aspects of your life.
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7. Patient/carer participation
Sharing experiences, taking part in research and advisory groups helps shape and improve services.
Being part of these groups can be empowering and impactful, using your knowledge and experiences to benefit other service users
As the ‘professional' patient/carer, your views are powerful and important. It may also highlight skills and confidence you never thought you had as well as meeting friends and like minded individuals.