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Partners, Parents, Family and Friends

Supporting a loved one with a neuromuscular condition can be challenging. Here are some ways you can get the information, help and advice you need.

On this page, you'll find information for:

Carers

If you’re looking after someone with disability or a medical condition, you may be a carer and can get help and support from the government and other organisations.

This Australian Government website is designed to support people who care for a family member or friend.

Carer Gateway provides:

  • Practical information and advice
  • Help to get the services and support you need including emergency respite
  • Free counselling services over the phone
  • Free coaching to help you in your role and
  • An online carer forum that lets you connect with other carers.

Some of the information available on this website includes:

  • What is respite?
  • Planning for emergencies including a template for an emergency care plan
  • Legal matters for carers
  • Young carer payments
  • Carer payments
  • Planning for the future
  • Planning for the end of life

To contact Carer Gateway call 1800 422 737 Monday to Friday between 8 am and 6 pm. You can also ask someone to call you back at a convenient time.

Carers Australia is the national peak body representing Australia’s unpaid carers. It provides services such as counselling, advice, information and registration, including:

Carers Australia can be contacted by calling 1800 242 636 or get in touch with the State or Territory Carers Association in your area:

Siblings

Siblings of children with a neuromuscular condition need support as well. Sometimes they may be overshadowed by the needs of their sibling with a neuromuscular condition. Siblings often play a role in caring for their brother or sister with a neuromuscular condition, which can impact their own needs and mental wellbeing.

Siblings Australia aims to increase the availability of information and support services for siblings of people with disability, chronic illness and mental health issues. The website has information for siblings, parents and professionals including health/disability workers, teachers and doctors.

Programs and resources include:

  • Sibworks – a peer support program designed for siblings aged between 8 and 12 years, though it can be adapted for other ages. The program helps siblings connect with other siblings dealing with similar issues. Watch a YouTube video about Sibworks.
  • SibChat – a closed Facebook group and website discussion forum.

Parents

This booklet produced by the Muscular Dystrophy Association (US) is an excellent resource for parents who have recently learnt that their child has a progressive neuromuscular condition. It contains strategies, advice and encouragement for parents.

Emotional wellbeing for parents

Parents or caregivers of a child living with a progressive neuromuscular condition can experience intense feelings of grief, profound sadness, anger and frustration. These feelings of 'Chronic Sorrow' are explored by Mary MacLean, a nurse and mother of a child with a chronic condition, on her website Living with Chronic Sorrow. Mary describes these feelings as “a normal grief response that is associated with an ongoing living loss.” She explains “It is the emotion-filled chasm between 'what is' versus the parents’ view of 'what should have been.'"

On her website, you can find more information about living with chronic sorrow including causes, triggers and recognising the signs, as well as coping strategies for parents and nurses.

If you are experiencing difficulties coping with the emotions of parenting a child with a neuromuscular condition you can seek help from your state or territory neuromuscular organisation or your GP. You may find it helpful to speak with a counsellor, social worker or psychologist.

Making decisions for the future

Making decisions is one of the fundamental rights we currently have. Unfortunately, sometimes the child or loved one you are caring for doesn’t have or loses the capacity to make their own decisions about their future.

Decision-making capacity is based on a person’s ability to

  • understand information and the choices that are presented to them
  • weigh up information and decide what a specific decision will mean to them, and
  • communicate that decision.

For more information on decision-making capacity see NSW Government’s Capacity Toolkit.

The Guardianship and Administration Act 1990 provides a legal framework to enable adults to exercise some control over how decisions will be made on their behalf, should they lose the capacity to do make their own. The framework provides three tools to support people:

  • Enduring Power of Guardianship: An enduring power of guardianship is a legal document, which enables an adult to appoint a person of their choice to make personal, lifestyle and treatment decisions on their behalf if they lose the ability to. They cannot make property or financial decisions.
  • Enduring Power of Attorney: An enduring power of attorney is a legal document, which enables an adult to appoint a person or an agency of their choice to make financial and/or property decisions on their behalf. They cannot make personal, lifestyle or treatment decisions.
  • Advance Health Care Directive: This enables an adult with full capacity to make decisions about their own health if they were ever unable to communicate their wishes. See our information about Advance Care Directives

For more information on the tools supporting decision-making capacity see the Office of Public Advocate or Guardian in each state:

Becoming the decision-maker

There are a number of scenarios where a parent, carer or loved one may find that they are required to make a decision for a loved one under the age of 18 years or if they have been appointed Guardian or Administrator for someone over the age of 18 who does not have capacity.

It is not easy to stand in someone’s shoes to make decisions on their behalf. Understanding their views and ideas may help with hard decisions as can having a trusted support team you can talk things through with.

However, many carers/parents/loved ones are also concerned about what will happen to their loved one, if they themselves have an accident and/or they lose their decision-making capacity.

This is where future planning is really important.

The WA Government’s FAQs for parents of children with a decision-making disability has information on a range of scenarios such as:

  • I am getting older and want to prepare for the future, can I apply to have a guardian and administrator appointed for my child now so I do not have to worry?
  • I have heard about enduring powers of attorney and enduring powers of guardianship, what are these?
  • How can I - the parent of an adult with a decision-making disability - make an enduring power of attorney, and/or enduring power of guardianship for that person?
  • Can I nominate a guardian for my (adult) child in my Will?

Further information can be accessed from the Office of Public Advocate or Guardian in your state (see contact details in the section above).

Acknowledgment of Country

Aboriginal, Australian, and Torres Strait Islander flags

We acknowledge the Traditional Owners of Country throughout Australia and recognize their continuing connection to land, waters and culture. We pay our respects to their Elders past, present and emerging.