Caring for Carers: Support for carers assisting people living with a neurological condition
MSWA has always recognised the needs of carers and families of our Clients living with neurological conditions. Living with a neurological condition can change people’s lives in profound ways and it’s common for their loved ones to also be impacted as they take on a caring role.
Carers often combine work, parenting and grandparenting, and home-making with their caring responsibilities – they are multi-tasking extraordinaries! Incredibly, almost half of primary carers have a disability themselves, which perhaps reflects the life stage of most carers whose average age is 54 as reported by the Australian Bureau of Statistics.
MSWA Allied Health departments, as well as the Counselling & Wellbeing team, can provide support not only to Clients but also to carers. We aim to assist in various forms to ease the burden, teach coping strategies and connect carers with others travelling the same journey.
What does it mean to become a carer?
This depends on your loved one’s condition and needs, their progression and the nature of their illness. Carers offer love and support, a listening ear and practical help of many kinds both in the home and outside of it. Long term, carers can take on many roles such as chauffeur, personal assistant, nurse, advocate, counsellor, coach, NDIS wrangler, holiday coordinator and support worker – on top of being a partner, son, daughter, sibling, friend or parent!
These new roles can take up increasing amounts of time, which sometimes means changing hours of work, or location of work, re-thinking career goals and retirement plans, family planning, sports and hobbies, and time with friends doing leisure activities. Indeed, research has shown that primary carers give 40 hours per week, or more, of care to their loved one. On top of time dedicated to caring, there are often also considerable financial implications – especially if paid working hours get reduced to fulfil caring responsibilities, which can have long-term consequences for pension age and beyond.
The ‘new normal’
Your loved one’s new normal is also your new normal because your lives are inextricably linked. Whilst you may gladly take on these changes and challenges, it is also important to acknowledge the losses and sacrifices being made, and all the emotions that naturally follow, such as sadness and grief, anxiety and even resentment. There is often a lot of uncertainty about disease progression, and in some cases, your loved one’s condition is known to come with a limited life prognosis which feels like a ‘ticking clock’. All this requires an enormous amount of emotional stamina, psychological adaptiveness, an ability to embrace the unknowns and create your new life as a carer in a way that aligns with your values. Many long-term carers believe that this role actually develops them in unforeseen ways to learn skills and find courage they wouldn’t have thought themselves capable of!
“I’ve learned to be patient, and my family would never have used that word to describe me before!” - Attendee of MSWA Carer Support Group.
Putting on your own oxygen mask first
The MSWA Counselling & Wellbeing service offers short term periods of counselling to carers in an accessible way, including face to face appointments and telehealth. Counselling provides a safe, confidential space to express feelings, identify your needs and boundaries, and learn coping strategies for whatever you find difficult. All in a judgement-free zone! Overall, the aim is to reinforce your resilience and capacity to continue finding joy, meaning and fulfilment in life, even when that life has taken an unexpected turn.
Our one-off Wellbeing workshops provide psycho-education and tools for self-support, which extend beyond caring across other areas of life. For example, you can learn stress management, mindfulness practices, effective communication and self-compassion to help you navigate all your different tasks and roles more smoothly.
The MSWA Counselling team also facilitates Carer Support Groups in various locations across the metro and regional hubs, connecting carers with each other to:
- Share experiences in a confidential environment
- Reflect on challenges
- Swap tips and advice
- Learn skills e.g. assertive communication, setting boundaries
- Celebrate the successes along the way.
It’s a monthly opportunity to sit down and talk with other people who really ‘get it’.
These support groups strongly encourage a focus on self-care and ‘filling your cup’. Many carers voice a concern that thinking of themselves is selfish – but the truth is, if you don’t look after yourself well, you won’t be able to continue looking after your loved one! Apart from that, you deserve time and attention in your own right, for your overall wellbeing, as we all do.
Research has shown that 58.3% of carers have low self-reported wellbeing compared to 30.4% of all Australians. Carers tend to de-prioritise their own mental and physical health concerns because they are so focused on their loved one’s needs. This can mean delaying GP appointments to get to the bottom of niggling symptoms, foregoing periodically scheduled tests and scans, ignoring disturbed sleep or putting up for years with digestive issues. It’s not uncommon for carers to injure their shoulders or backs, or even have falls, in helping with daily activities. If you need a reminder, it’s important to put your own oxygen mask on first!
Carer burnout – prevention is key!
The long-term nature of caring means there is a high risk of exhaustion and even burnout for carers. Early signs of burnout include:
- Increased levels of feeling stressed, under pressure
- Mood swings and low mood, tearfulness
- More irritable, snappy, critical
- Drinking more alcohol, using more legal/prescribed drugs, comfort eating
- Feeling empty, flat, cynical, or pessimistic
- Loss of interest in previous hobbies or social networks
- Disturbed sleep – not enough, or a lot more than your usual routine
- Experiencing physical symptoms like migraines or gut problems, for the first time
It’s hard to recover from carer burnout whilst still caring, so ideally you will be able to spot that you are struggling before you get to burnout stage. This is where a good friend, family member, counsellor or members of your carer support group can provide valuable feedback if they think you’re under increasing strain. If you haven’t got a counsellor, now would be a great time to start. Sometimes being a carer is like the proverbial frog in the pot of boiling water who doesn’t realise how hot it’s getting and doesn’t hop out!
The refreshment of MSWA Respite
MSWA Respite welcomes Clients living with any neurological condition to stay from a few days, up to a few weeks. Care is provided around the clock, and this enables carers to take a well-earned break from being ‘on duty’, and perhaps go travelling, take a course, or spend time with friends and family in a different way than would otherwise be possible. This re-charging of batteries benefits everyone’s wellbeing in a way that can last for months.
