If you are a parent, partner, grandparent, sibling, child or someone else who takes on a caring role to someone living with CF, it is incredibly important you take the time to look after yourself, feel connected to others and have practices in place to take care of both your physical and mental health.
CFWA acknowledges the vitally important role that carers play in our community. We recognise carers as key partners in the delivery of care, and commit to the principles of the Carer Recognition Act.
Roles of a Carer
The roles of a carer vary greatly and is also likely to change over time. Some common areas of care include:
- Physical support- Assisting with general care and treatments, arranging appointments, picking up medications, babysitting and much more.
- Emotional support– Supporting family members through both the ups and downs of living with CF.
- Financial support– Assisting with CF related costs.
Young Carers
Young carers are anyone under the age of 25 years of age who take on a caring role for someone in their household, such as siblings or children of an adult with CF. Young carers may assist with things such as giving medication, helping with physio, emotional support, household chores, personal care and more.
Young carers may experience stress. Signs that your child may be experiencing stress can include:
- Being anxious, withdrawn or angry
- Losing interest in friends or favorite activities
- Reverting to a former level of immaturity
- Performing poorly in school
- Pushing too hard to achieve or be a perfect child
- Rebelling in negative ways (staying out too late, smoking, drinking)
Parents can support their children by:
- Encouraging all of your children to learn about CF, their sibling/parent’s treatment regimen, and why it’s so important.
- Carving out family time that does not revolve around CF.
- Setting aside daily one-on-one time with each child, even if it’s brief.
- Letting them participate in CF care so they feel pride in helping care for their sibling/parent.
- Including all family members in family decisions about CF that may affect them e.g. hospital admissions.
Services for Carers
It’s really important for carers to feel connected and have a strong support system. CFWA offer various services and programs to support carers.
- Financial support– We offer various subsidies to ease the financial burden of CF. These assist with the costs of hospital travel/parking, physio equipment, physical activity and mental health gap funding.
- Peer support events– We offer a range of events designed to connect carers, create support networks and provide respite.
- Short term cleaning & respite packages– We can offer short term cleaning packages for people experiencing an acute change in circumstances. This is an 8-week package which provides 2 hours of cleaning a fortnight. This program has specific criteria.
- Community Support Worker (CSW) program– Our CSW program provides carer respite by offering assistance with airway clearance, nebulisation, and exercise.
- Counselling and general support– Our psychosocial team can offer counselling and mental health support, as well as assistance with Centrelink, referrals and more.
- Child & Family Therapy– Our Child & Family Therapist can support the whole family; the child with CF, their siblings and their parents. She can provide practical solutions and support for any difficulties that arise in the family system, particularly when dealing with CF.
- Transplant Support– If someone you care for is pre or post transplant, we can offer extra support in the home, including cleaning packages and increased CSW hours.
- Resources and information– Access reliable, up-to-date information on a huge range of CF related topics.
- CFTalk Parents Facebook Group– A private group for WA parents and grandparents to share stories and make connections.
For more information about any of our services, contact services@cfwa.org.au.
Emotional Health & Wellbeing
Caring for someone with CF can greatly impact your emotional health and wellbeing. Feelings of stress may peak at certain times, such as at diagnosis (this may be initial diagnosis or a new diagnosis such as CF related diabetes), changes in health, upcoming procedures or hospitalisations/clinic appointments.
It is important to be aware of the signs of stress so you know when you might need to ask for more help. Symptoms of stress can be:
- Physical– Headaches, stomach problems, back pain, and sleeplessness.
- Emotional– Frustration, sadness, depression, anxiety, guilt, anger, loneliness, resentment, decreased enjoyment of pleasurable activities, social isolation and blaming.
- Mental– Forgetfulness, mental exhaustion, more frequent accidents, trouble making decisions, poor attention and memory, and confusion.
- Spiritual– Feelings of alienation and hopelessness.
Self-Care
Self-care is vital for carers and helps you cope better during stressful periods. It refers to activities that preserve and maintain your physical, emotional and mental health.
- Physical– Eat a well balanced diet, exercise, manage stress in positive ways, seek respite when needed.
- Relationships– Attend support group events, spend time with family and friends, recognise when you need help.
- Work-life balance– Ensure you have a balance between work, caring and things you enjoy.
- Spirituality– Make time for spiritual beliefs, practice gratitude and positive thinking.
Share the Load
It is so important you aren’t the only person taking on the caring role. Having someone else who can help with physio, medications, appointments, and all the other factors that come with being a carer, allows you to not only have a break, but also have someone who understands the ins and outs of daily CF life and can offer support.
Tips for sharing the load:
- Be open and honest with what you need from others. Communicating exactly what you want of people can be helpful for them and you.
- Learn to trust. Sometimes it can be hard to let go and ‘share the load’. Letting go, even a little bit, can be difficult for some people but can make your life easier in the long term.
- Don’t suffer in silence. If you don’t ask for help, people may assume you’re fine.
Mental Health Support
If you are struggling and need support, we can help. Our psychosocial team can offer mental health support and assistance accessing further help when necessary. If you would like to access support from a psychologist, it is important to see your GP and get a Mental Health Treatment Plan first, which will enable you to access both government and CFWA rebates that can help cover associated costs. Read our mental health factsheets for more information:
External Resources:
- CF and Mental Health: Building Resilience (CFA & CF Foundation)
Family Planning
For parents
You may be considering having more children and wondering what your options are. The following factsheet has lots of information about future pregnancies for CF carriers.
For partners
You and your partner may be considering having a family and wondering what your options are. Many adults living with CF are now able to have families of their own. The following factsheets have information about CF reproductive options.
External Resources:
External Support Organisations
- Carer Gateway– Emotional and practical services and support for carers.
- Carers WA– Support for carers, including counselling, workshops, respite events and more.
- Young Carers Program– The Young Carer team can help young carers thrive and reach their goals. This could look like helping get involved with more social activities in your area, discovering your future career pathway or even helping out with practical things like schools supplies, getting a driver’s license or navigating Centrelink.
- Kiind (formerly Kalparrin)- Based in PCH, they support families raising children with chronic medical and/or health conditions to access information, services, peer support, in-hospital support and fun events.
- Little Dreamers– Australia’s leading Young Carer organisation, offering dream experiences, mentoring and tutoring programs, support and more.
- Young Carers Network– A place for young carers to learn about support services, access resources and share their stories.
- Siblings Australia– Access information about sibling support.
- Livewire– Online safe space for kids with illness or disability and their siblings to chat and share experiences.
Carer Stories
Parent Stories
We have a range of interviews on our blog, chatting to carers about their experiences caring for someone with CF. Click here to read them.
External Parent Stories:
- Coping While Caring for Someone with CF (CF Foundation)
- Taking Care of My Daughter by Taking Care of Me First (CF Foundation)
Partner Stories
We have a range of interviews on our blog, chatting to people who have a partner with CF about their experiences, covering topics including marriage, having a family, transplant and more.
Click here to read them.
External Partner Stories:
- Living with CF: A Partner’s Perspective (CF Ireland)
- A Life with a CF Wife (UK Trust)
- Being a CF Spouse During a Pandemic (CF Foundation blog)
- An Interview with My CF Caregiver Husband (cysticfibrosis.com)
- Striving for the Impossible: Caring for My Wife with CF (CF Foundation)
- Taking Care of Yourself When Your Spouse Has CF (CF Foundation)
Sibling Stories
We have a range of interviews on our blog, chatting to siblings about their experiences.
Click here to read them.
External Sibling Stories:
- Young Carer Stories (Young Carers Network)
- Growing Up With a Sibling Who Has CF (CF Foundation)
- Siblings and CF- Growing up in the Shadow of CF (CF Trust)
Grandparent Stories
We have a range of interviews on our blog, chatting to grandparents about their experiences.
Click here to read them.
External Grandparent Stories:
- Grandparent & Kinship Carers (Raising Children Network)
- For My Grandchild Living With CF