• Sarah Hickson

The Health Risks of Care-Giving and Why Self Care is so Important

Updated: Aug 12


Part 1

Raising a child with specialised needs can be an incredibly rewarding and enriching journey that gives personal insight and fulfilment quite like no other. Drawing upon incredible strength, determination, resilience, compassion and love - with the child’s best interests at heart – parents, care-givers and allies involved in the child’s difficult journey, collectively work hard at fostering, nurturing and advocating for the child’s growth and potential, actively contributing towards a quality of life that is filled with opportunity, equality and inclusion.

These positives and strengths, however, are intertwined with the many unique challenges and demands that arise from living a life with disability, and parents try to navigate their way through all too often without adequate emotional and financial support.

Health Risks and Vulnerabilities

It is hardly surprising to anyone that the collective impact of caregiving stressors, especially if strong behavioural issues are present, can contribute towards feelings of burnout, loneliness and isolation of the care-giver. According to the Australian Unity Index (2017), carers (not exclusive to caring for an individual with disability) were shown to have the lowest subjective wellbeing out of any large group measured, with half of those surveyed being moderately stressed and experiencing moderate to severe depression. Two stress-related conditions identified in the literature that are linked to the demands of caregiving include carer’s burnout and compassion fatigue. Carer’s burnout is a state of physical, emotional and mental exhaustion in response to an inability to keep up with overwhelming demands and may be accompanied by a change in attitude – from positive and caring to negative and unconcerned. In contrast, compassion fatigue (CF) is associated with feelings of helplessness, hopelessness, an inability to be empathetic and a sense of isolation that results from continuously being exposed to the suffering of another.

The Value of Self Care and Mindfulness

There are many research articles highlighting the impact that chronic stress has over the whole body inclusive of weakened immunity and vulnerability to autoimmunity, metabolic disorders contributing weight gain, cardiovascular disease and insulin resistance, sleep difficulties and insomnia, poor digestion and digestive problems (e.g. IBS), thyroid issues and the development of chronic anxiety and/or depression. In light of this big questions are contemplated. If parents are unable to immediately change their circumstances and the contextual environment in which they live, how can they manage their own levels of stress and care for themselves while caring for their kids? How can parents build their internal resources, feel empowered and thrive through the adversity they deal within their day to day lives?

While there are many interventions that can be helpful, what can you start doing now to feel empowered and take control of your wellbeing? To follow are five tips, spread out across a two part series, to help you to get started.

Prioritise and advocate your need for a break

One of the most beautiful acts of love that I personally observed working as a support worker has been from parents working hard for their families and speaking up for their children to ensure that their child’s needs are met and supported. Parents are excellent at advocating for their children yet are often not so great for speaking up for and advocating for the needs of their own. Time constraints are paramount as it is for parents living in this modern world but it is even more so raising a child affected by disability who is so dependent on the energy of a caregiver, I get this. However, self-care doesn’t need an investment of huge amounts of time or money. It can be small incremental practices into your day to day life. In fact, in reference to time out, research studies have found that as little as one hour of time out a week significantly reduced the incidence of depression in new mums. If possible, seek support from your family, friends or if funding allows – a support worker for an hour or two of respite each week. Take the time for brisk walk through a park with a close friend, deep stretching through a yoga class or a massage. Alternatively, perhaps after the kids go to bed, run the bath filled with Epsom salts (rich in magnesium sulfate and a powerful nervous system relaxant) and add a few drops of lavender oil. Create time to laze somewhere quiet and read a chapter of your favourite book or switch off your phone for a while and allow yourself to be fully absorbed in an episode your favourite T.V show or a movie, uninterrupted. Alternatively, engage in a weekly creative process of scrap booking while listening to music, an activity that beautifully expresses and encourages reflection on the journey its been. Whatever your version of down time is, bump it higher on your priority list, do it and treat it as sacred.

Manage Perceived Stressors and Distress through a Regular Mindfulness

Practice

Mindfulness, a skill that is developed through regular practice, provides many

benefits including:

• A reduction in psychological distress

• Improved self-regulation and psychological functioning

• Greater openness and acceptance to one’s experiences

• The development of new insights and perspectives of one’s surrounding

environment, empowering you to focus on what you can control

Furthermore, mindfulness has the power to switch on the parasympathetic (“rest and digest”) nervous system which down regulates the physiological stress response by slowing down the heart rate, optimising digestive capacity and restoring homeostasis, the internal balance of the body. Multiple research studies investigating face-to-face mindfulness-based interventions for parents and caregivers overwhelmed by their child’s situation and future challenges found a reduction in stress levels and improvements in mindfulness, selfcompassion, and wellbeing (Bazzano, et al 2013). Other studies investigating a regular practice of yoga and meditation were significantly associated with improvements in depression amongst dementia caregivers. Often the reality for many caregivers and parents, as I have mentioned previously, is the shortage of time and resources they have to engage in a program outside of home. A simple, accessible alternative that can be easily practiced for a few minutes each day at home could be found through your mobile phone. A smartphone-based randomized-control trial performed by Howells, Ivtzan and Eiroa-Orosa (2016), supported the viability of smartphone mindfulness apps in significantly enhancing psychological wellbeing, underscoring the quality of application content and the activity of its user. Mani, Kavanagh, Hides and Stoyanov (2015) conducted a systemic study review on the quality of mindfulness-based mobile apps. Using an expert rating scale, they found that apps such as The Headspace app, Smiling Mind,

iMindfulness and Mindfulness Daily scored the highest in quality based on their visual aesethics, engagement, functionality and quality of information.

Map out your support network and create a sense of community

Feelings of loneliness and isolation is highly prevalent and problematic for parents and caregivers who feel unsupported and that they are in this alone. Grabbing a piece of paper, consider the people in your life that you can call on for support in those moments of struggle. Does it feel adequate? Are there more resources needed? Is this an opportunity for you to consider and reach out for outside assistance if there happens to be gaps in your support network, perhaps in the form

of community support groups or counselling – or even phone counselling? Multiple studies have shown that social connection improves our psychological and physical wellbeing by reducing the feelings of depression and anxiety while also strengthening our immune system and improving our longevity overall. Don’t be afraid to reach out if you need help.

Practice self-reflection and never lose sight of how far you and your family

have come

From the moment of knowing that something isn’t quite right, through to diagnosis and beyond

– the journey of a special needs parent is transformative one. Your journey may have begun with despair, sadness and grief for the life you had imagined for your family, yet somewhere along the way you developed an unwavering love and strength in advocating for your child’s needs, supporting your family and being resilient in spite of the multiple challenges many parents face trying to navigate the world of disability. It’s so easy to get absorbed by your own inner critic for not “doing enough” that you may miss recognising your own strength in continuing to strive forward towards a more hopeful future despite all the setbacks, despite all the challenges, despite all the times when you felt like you couldn't go on. The fact that you keep moving forward signifies the enormity of the love and care you have for your child and family and is nothing short of admirable. Create the time to reflect on this often, keep a journal and write down the lessons you learnt, the things you feel grateful for and are most proud of. When you are feeling caught in a dark space read over your reflections as a reminder for the meaning and purpose this life brings to you. You may be humbled to observe your insights and strength.

In part 2 of this series I will highlight the value of nutrition in supporting your own mental, emotional and physical wellbeing and will provide you with some easy, time-saving tips to support your own vitality and energy levels. Stay tuned!

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