Between January and March, we connected with carers who are part of the MND NSW carer program. MND NSW would like to thank you for generously giving up your precious time and sharing your unique experience with us. It was an absolute privilege to hear your stories.
Your experience and ideas will help to inform the development of our MND Carers Program.
We have contacted all MND Carer Program participants and spoke directly to 84% of carers. Conversations ranged from a brief chat of two minutes to much longer discussions of over 90 minutes. The valuable time you have taken to speak with us, given how busy your lives are, cannot be underestimated.
So, this is a summary of what you’ve told us about being a carer and what it is really like supporting someone living with MND.
Demographics
MND Carers are a diverse bunch of people. You are partners, parents, children, siblings, and friends. You live with the person you care for, are close by, far away and even overseas. You are managing other caring responsibilities such as children, grandchildren, ageing parents and other family members with a disability.
You live in the suburbs, the urban areas, regions and remote parts of NSW, the ACT, and the NT. You live in houses, apartments and residential living. Some of you are retired, others are working full time, part time and are studying. Many of you have left work to care for your loved one with MND.
A small number of you identify as Indigenous or come from culturally and linguistically diverse backgrounds.
What MND carers are going through
Some of you feel very well supported by family and friends in your caring role and have a good support network around you, others are on their own and feel isolated.
Some of you can take time for self-care including addressing your own health needs, eating well, getting enough sleep, keeping up with exercise, friends and family. For others, there is just not enough time. You are exhausted, feel burnt out, guilty and overwhelmed. And for many, you swing between the two.
The challenges that we don’t often talk about
Some of you feel the cultural expectation of providing care. Some are grappling with your own major health issues including your mental health. Others have experienced difficulties and a breakdown within the caring relationship and your families. Managing finances and budgeting can be hard. You are dealing with your own challenges at work managing your leave arrangements, natural disasters, modifying, moving and selling your home, supporting other family members who are not coping. Several of you are dealing with other major bereavements in life and are keeping it together….. for everyone else.
The challenges that we share
Many of you feel like you are on a bit of a roller coaster coping as well as you can with the demands of caring which can change from day to day. You are all navigating systems that are complex, challenging, and at times overwhelming. These systems include but are not limited to the hospital system, Aged Care, the National Disability Insurance Scheme, Carer Gateway, plus working with medical, allied and care professionals in your home.
Many of you are dealing with changes in cognition and behaviour from the person living with MND, dealing with falls, learning how to use a PEG, and sometimes supporting someone who might be in denial about their condition and support needs which can all be extremely stressful and upsetting.
The strategies we learn from one another
You are getting the hang of things as time goes on, getting organised, learning to say no, putting on a brave face, relying on your spirituality or faith structure and accepting support. You are hungry for knowledge and information, gaining perspective and making new connections.
Many of you are getting support from other carers at your local MND support group or attending the online Carers Kitchen Table Support Group while some of you are accessing counselling. You are constantly learning, on the job, from webinars and by attending MND education events like the MND UpSkill Workshop.
You are always thinking ahead and trying to put things in place, like palliative care, vital alert systems, power of attorney and advance care directives. You are initiating tough conversations about the introduction of assistive technology, symptom management interventions, falls prevention, respite care and voluntary assisted dying. All while supporting the dignity of risk of the person you are caring for, so they feel in control of the way they choose to manage MND changes.
You are cooking lots of food, modifying meals, mastering assistive technology, and supporting the people you love by making plans, creating memories, and ticking things off the travel bucket list in Australia and overseas.
Know that you are amazing, resilient and that you are not alone.
We deeply value your lived experience and feedback. It is an ongoing process. Let’s keep chatting and feel free to let us know how we can improve our support to you.
The MND NSW Carer Program is FREE to join for all carers supporting a person living with MND.
If you are a carer and haven’t yet had a chance to join the MND NSW Carers Program, click here and Complete our Online Intake Form or call our Info line on 1800 777 175.
We will send you a Service Agreement to review and sign.