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Parents and Other Carers

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.

This page is designed to offer support to those caring for someone with CF and share stories of the ‘lived experience’.

Read our factsheet on carers to find out more about being a carer.

Parents

Emotional Health and Wellbeing

Having a child with CF can have a huge impact on your mental health and wellbeing. Anxiety and depression are common and believed to be two to three times more common than in the general population.

Feelings of stress may peak at certain times, such as:

  • Diagnosis (this may be initial diagnosis or a new diagnosis such as CF related diabetes)
  • Changes in health
  • Upcoming procedures
  • Hospitalisations/clinic

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.

Mental Health Support

If you are struggling and need support, our social workers can help. We offer over the phone or person-to-person counselling and can assist in accessing further help when necessary. If you would like to access support from a psychologist or counsellor, it is important to see your GP and get a Mental Health Care 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:

Useful External ‘Mental Health’ Resources:

Coping Skills

It is vital to have coping skills to help you deal with life in general, but also the extra stressors of having a child with CF. These skills are extremely important as they build resilience and the ability to deal with worrying or demanding situations. Here are some simple strategies you can implement to help you cope:

Practice Self-Care

Self-care refers to activities that preserve and maintain your physical, emotional and mental health. It involves regularly engaging in helpful behaviours that will protect your mental health during periods of stress e.g. physical activity, meditation, time with friends etc.

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 having a child with CF, 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.

Useful External ‘Coping Skills’ Resources:

Support for Parents

It’s really important for carers to feel connected and have a strong support system. CFWA offer various ways for our members to connect within the CF community. These include Facebook support groups, member events, peer support and more:

  • Carer Support Events– Designed to help parents and other carers meet and develop support networks e.g. ladies high tea, parents and carers dinner, parents retreat and regional outreach dinners
  • Home Care Worker (HCW) Program– We offer a HCW service to families in the metropolitan area to provide assistance with airway clearance, nebulisation, routines, exercise, light home duties and occasional respite
  • Counselling and General Support– Our social workers can offer counselling as well as support with Centrelink, referrals and more
  • Resources and Information– Access reliable, up-to-date information on a huge range of CF related topics
  • Education– We can provide CF education to teachers, community groups and health professionals to make your/your child’s life easier
  • Financial Support– We offer subsidies for regional travel, exercise/equipment and mental health that you/your child can access to ease the financial burden on your family
  • CFTalk Parents Facebook Group– A safe space for WA parents and grandparents to share stories, discuss issues and make connections.

External Support Organisations

  • Carers WA Support for carers, including counselling, workshops, respite events and more
  • Kalparrin– Supporting families raising children with chronic medical and/or health conditions to access information, services, peer support and fun events for all the family
  • Carer Gateway– Practical advice and support for carers

Parent Stories

We have a range of interviews on our blog, chatting to parents about their experiences raising a child with CF. Click here to read them.

Partners

Although you may not consider yourself a ‘carer’, if you have a partner with CF, it is likely you assist with some aspects of care, such as:

  • Physical support- Going to appointments, picking up medications, assisting with general care if unwell and much more
  • Emotional support- Supporting your partner through both the ups and downs of living with CF
  • Financial support- Assisting with CF related costs, supporting your partner if unable to work and more

The role you play is also likely to change over time and throughout your relationship, depending on your partner’s health.

Emotional Health and Wellbeing

Having a partner with CF can greatly impact on your emotional health and wellbeing. Feelings of stress may peak at certain times, such as:

  • Diagnosis (adult diagnosis or a new diagnosis such as CF related diabetes)
  • Changes in health
  • Upcoming procedures
  • Hospitalisations/clinic

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.

Mental Health Support

If you are struggling and need support, our social workers can help. We offer over the phone or person-to-person counselling and can assist in accessing further help when necessary. If you would like to access support from a psychologist or counsellor, it is important to see your GP and get a Mental Health Care Plan first, which will enable you to access government rebates.

Useful External ‘Mental Health’ Resources:

Coping Skills

It is vital to have coping skills to help you deal with life in general, but also the extra stressors of caring for someone with CF. These skills are extremely important as they build resilience and the ability to deal with worrying or demanding situations. Here are some simple strategies you can implement to improve your ability to cope during stressful periods:

Practice Self-Care

Self-care refers to activities that preserve and maintain your physical, emotional and mental health. It involves regularly engaging in helpful behaviours that will protect your mental health during periods of stress.

  • 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, particularly if your partner is unwell. Having someone else who can help with medications, appointments, housework, cooking, and all the other factors that come with having CF, allows you to have a break, share the load and feel supported.

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 ask for help 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.

Useful External ‘Coping Skills’ Resources

Support for Partners

CFWA can provide the following support to partners:

  • Carer Support Events– Designed to help partners and other carers meet and develop support networks e.g. ladies high tea, carers dinner, post-transplant support dinner, regional outreach dinners, webinars and more
  • Home Care Worker (HCW) Program We offer a HCW service to adults in the metropolitan area to provide assistance with airway clearance, nebulisation, routines, exercise, light home duties and occasional respite if you have children
  • Counselling and General Support Our social workers can offer counselling as well as support with Centrelink, referrals and more
  • Resources and Information– Access reliable, up-to-date information on a huge range of CF related topics
  • Financial Support– We offer subsidies for regional travel, exercise/equipment and mental health your partner can access to ease the financial burden on your family
  • Transplant Support– If your partner is pre or post transplant, we can offer extra support in the home to make both of your lives easier, including cleaning and increased home care worker support
  • Parenting with CF– Our ‘New Parent Program’ can offer support to new parents with CF (and their partners) by providing structured in-home support including cleaning, respite and support webinars with other CF parents

Other Support Organisations

  • Carers WA– Support for carers, including counselling, workshops, respite events and more
  • Carer Gateway– Practical advice and support for carers

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:

Siblings & Offspring

Having a sibling or a parent with CF can sometimes be hard. Having someone with CF in the family affects the whole family, not just the person with CF. It is vital that healthy children feel important, equal and involved.

Young carers are considered people aged up to 25 years of age who provide unpaid care and support to a family member with CF. Young carers may assist with things such as giving medication, helping with physio, emotional support, household chores, personal care and more.

Emotional Health & Wellbeing

Having a sibling or parent with a chronic illness, such as CF, it is common for healthy children to experience:

  • Guilt- That their sibling/parent is sick or that they may feel resentful at times
  • Worry- That their sibling/parent will get sicker or that they may catch CF
  • Resentment- That they may have to take on more responsibilities or that they’re getting less attention
  • Embarrassment- About their sibling/parent coughing in public or having a PICC line in
  • Responsibility- Such as more chores, not bringing home germs

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)

It is important parents 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 siblings 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

External ‘Mental Health’ Resources

Support for Siblings & Offspring

CFWA can provide the following support to siblings and offspring:

  • Sibling & Offspring Events– We host annual events for siblings and offspring including our Sibling and Offspring Camp and Sibs Day Out. Adult siblings are welcome to attend any of our carer events
  • Sibling & Offspring Webinar Informal online peer support group catch ups for sibling and offspring aged 10-18 years, hosted by our Social Worker
  • Resources and Information- To learn more about different aspects of CF
  • Counselling and General Support– Our Youth Social Worker Haylee can offer support including counselling and referrals to further help when necessary
  • Family Education– Our Education Coordinator can provide family education to help siblings/offspring understand more about CF
  • Rozee Magazine- Our annually produced kids magazine with information and interviews for siblings and offspring:

Other Support Organisations for Siblings & Offspring

  • Carers WA- Support for carers, including counselling, workshops, respite events and more
  • Young Carers Program (Carers WA)- Support for young carers aged 8-25, including social and wellness events and peer support groups
  • Young Carers Network– a place for young carers to learn about support services, access resources and share their stories
  • SibTeen– a Facebook group for teens, co-hosted by the Sibling Support Project in the US and Siblings Australia
  • 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

Siblings Stories

We have a range of interviews on our blog, chatting to siblings about their experiences. Click here to read them.

External Sibling Stories:

Grandparents & Extended Family

If you are an extended family member to someone with CF, such as a grandparent, aunt/uncle, cousin or other, you might want to learn more about CF or reach out for support. Although you may not consider yourself a ‘carer’, it is likely you assist with some aspects of care, such as:

  • Physical support- Going to appointments, babysitting, assisting with general care if unwell and much more
  • Emotional support- For the child’s parents, the person with CF, siblings or other
  • Financial support- Assisting with CF related costs

Emotional Health and Wellbeing

Having someone in your family with CF may at times impact on your emotional health and wellbeing. Feelings of stress may peak at certain times, such as:

  • Diagnosis (initial diagnosis or a new diagnosis such as CF related diabetes)
  • Changes in health
  • Upcoming procedures
  • Hospitalisations/clinic

Mental Health Support

If you are struggling and need support, our social workers can help. We offer over the phone or person-to-person support and can assist in accessing further help when necessary. See Counselling and Support for more information.

Support for Extended Family

CFWA can provide the following support to extended family members:

Other Support Organisations for Extended Family

  • Carers WA– Support for carers, including counselling, workshops, respite events and more
  • Carer Gateway– Practical advice and support for carers

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

CFTalk Films

Here are the full length verions of out CFTalk: Parents and Carers short films. The idea of these is to share the lived experience of being a carer to someone with CF. We have plans to add to these in the near future, with more interviews with partners and siblings.

Early Years

School Years

 

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