Parent Carer Wellbeing

Many parents of children with disabilities or special needs encounter extra challenges on physical, emotional and spiritual levels. When life deviates from the typical, mainstream path, it can lead to feelings of isolation and the sense that you are alone in your emotions and experiences. I promise, you are not alone.

Life can be stressful even under the best circumstances. We often face overwhelming demands on our time and energy. Parenting a child with complex medical needs adds an additional layer of challenges. Non-stop worry, acute medical needs, the ongoing battle for services that can be impossible to obtain, and living with uncertainty.

Many parent caregivers have experienced a trauma: seeing their child suffer, go through invasive medical interventions, or even the day-to-day cumulative traumas and may show ‘evidence of post-traumatic stress. I call this Chronic Traumatic Caregiver Stress, CTCS. Sadly, our society is not designed to support traumatized parents.

I use the acronym HEALING to refer to the various ways parent caregivers can support their well-being.

It is important to remember…

Constant stress has a detrimental effect on us, although it may feel that there is no getting away from it there are simple everyday things we can do to boost our health and happiness.

Self Compassion

Self-compassion is an essential practice for parent caregivers, offering refuge amid the often overwhelming demands of caregiving. As parents of children with special needs, it’s easy to become consumed by the constant attention and care required, leading to burnout and emotional exhaustion. By embracing self-compassion, you acknowledge your own struggles and emotional pain with the same kindness and understanding you extend to your child.

It involves recognizing that it’s okay to have limitations and to feel tired or frustrated. Practicing self-compassion means taking time to care for your own well-being, whether through small acts of kindness toward yourself, seeking support from others, or allowing yourself to rest without guilt.

Quality Sleep

Everyday functioning without quality sleep is harder on every level.  Here are a few positive sleep habits:

• no mobile phones or electronic equipment in the bedroom
• regular bedtime with a wind-down routine – having a bath, reading a book
• no caffeine within a few hours of bedtime
• being grateful for the positives that happened during the day – try a gratitude journal
• meditation for 5 minutes

Moments to Refresh & Rejuvenate

We all flourish with personal time, and once you have children this is often in short supply.  Be sure to carve out some precious  ‘me’ time in order to recharge your batteries, otherwise, the demands of caregiving can become onerous and resentment can creep in.

Community & Connection

Spending time with those who are positive influences in our lives makes us feel good about ourselves, especially when it’s so easy to feel all alone and isolated caring for your child.  There is a tendency when you are feeling down to withdraw from others, but this is part of a vicious circle that only adds to your loneliness and isolation.  Try to make the effort to see other people, even for five minutes to reconnect with the world out there.

Feeling part of a community or group allows you to safely talk about the things you can’t with friends and family. Knowing that someone really ‘gets’ that you may be exhausted, overwhelmed and struggling rather than being faced with judgment or dismissal has have a positive impact on your well-being.

Nourish Through Food

Nourishing your body with wholesome, nutritious food is essential for maintaining energy and resilience as a caregiver. Prioritize a balanced diet rich in fruits, vegetables, healthy proteins, and whole grains to support your physical health and mental clarity.

Simple meal prepping can save time and ensure you have healthy options readily available. For instance, prepare a batch of quinoa and roasted vegetables at the beginning of the week for quick, nourishing meals.

Incorporating nutrient-dense snacks, such as almonds, plant-based yogurt, carrots and hummus, or fresh fruit, can also help keep your energy levels stable throughout the day. Remember, taking the time to eat well is not just about fueling your body—it’s an act of self-care that can enhance your overall well-being and ability to care for others.

Exercise

Regular exercise is a powerful tool for enhancing your physical and emotional well-being as a caregiver. Engaging in physical activities, whether it’s a brisk walk, yoga, or a home workout, helps to release endorphins, reduce stress, and improve sleep.

Aim for at least 30 minutes of moderate exercise most days of the week and if that’s too long start with 5. Remember not to be hard on yourself. Those 5 minutes add up.

For example, you might take a morning walk while listening to your favorite podcast or join a local fitness class to build a sense of community. If time is limited, short, high-intensity workouts can be just as effective. Exercise not only boosts your mood and energy but also provides a healthy outlet for managing the daily stresses of caregiving.

Mindfulness

Incorporating mindfulness into your daily routine can significantly improve your emotional resilience and overall well-being as a caregiver. Mindfulness practices, such as deep breathing, progressive muscle relaxation, or simply paying attention to your thoughts and feelings without judgment, can help you stay grounded and present.

For instance, try a simple breathing exercise where you inhale deeply for four counts, hold for four counts, and exhale for four counts.

Practicing mindfulness during routine activities, like drinking your morning coffee or washing dishes, can also create moments of calm and clarity. By cultivating mindfulness, you can better manage stress, enhance your emotional balance, and improve your connection with both yourself and your loved one.

Joy

Finding and nurturing moments of joy is crucial for maintaining a positive outlook and emotional well-being as a caregiver. Joy can be found in small, everyday moments—whether it’s watching a funny movie, spending time in nature, playing a favorite game, or engaging in a hobby you love. You don’t need to add anything new to your day, just start to recognize the joy that already exists. With mindful awareness, you will start to see the light where before you only saw darkness.

Schedule regular activities that bring you happiness and laughter, and allow yourself to be fully present in those moments. For example, you might set aside time each week for a family game night or a solo creative project. Prioritizing joy not only lifts your spirits but also replenishes your energy and resilience, making you a more effective and compassionate caregiver.

Journaling

Journaling is a therapeutic practice that allows you to process your emotions, reflect on your experiences, and gain clarity. Set aside a few minutes each day to write about your thoughts and feelings.

Here are five journal prompts to get you started:

1. What are three things you are grateful for today?
2. Describe a recent challenge you faced and how you overcame it.
3. What are your biggest sources of joy, and how can you incorporate more of them into your life?
4. Write about a time when you felt particularly strong or resilient.
5. What are some self-care activities that you can commit to doing regularly?
Through journaling, you can explore your inner world, release stress, and foster a deeper understanding of your caregiving journey.

Meditation

Meditation is a powerful practice for reducing stress and enhancing mental clarity. A simple technique to start with is focused breathing meditation.

Sit comfortably in a quiet place, close your eyes, and take a few deep breaths. Focus your attention on the sensation of your breath as it enters and leaves your nostrils. If your mind starts to wander, gently bring your focus back to your breath.

Practice this for 1 minute. Then try 2 minutes and see if you can work up to 5-10 minutes daily. Meditation helps to calm the mind, reduce anxiety, and improve emotional regulation, providing you with a sense of peace and balance that can greatly enhance your caregiving experience.

My goal is for all parents and carers to realize they are not alone. There are many other families also going through similar experiences and feeling complex emotions.

Please remember to treat yourself with self-compassion during difficult times. Wellbeing is an ongoing endeavour so try to carve out time that is yours each day, however small it may be, and remind yourself that you are worth investing in.

To your health & happiness,

Love,

Amanda XX