Focusing on the carer relationship, this webinar explores the importance of maintaining carer wellbeing and identity. Jane Mitchell, PAH Clinical Nurse Specialist, discusses practical ideas for gaining support and navigating life with PAH. Robyn, who cares for her daughter living with PAH, shares her story and personal insight in managing the practical and emotional challenges of caring for a loved one and yourself.
The webinar emphasises the challenges of being a carer for someone with pulmonary arterial hypertension (PAH) including the emotional and physical toll caregiving can take. She highlights the importance of seeking information and support, noting that caring for a loved one can intensify emotions and lead to feelings of loneliness and helplessness.
The webinar highlights the importance of education for both patients and carers, recommending reliable resources such as PHA Australia, PHA UK, and the Lung Foundation Australia. The webinar encourages carers to focus on self-care, including getting good sleep, regular exercise, and maintaining a healthy diet. Journaling and mindfulness can also help manage stress and emotions.
Robin, a full-time carer for her daughter with PAH and her elderly mother, shares her personal journey. Her daughter, diagnosed with a rare genetic condition called Kartagener syndrome, has faced numerous health challenges, including over 80 hospital admissions. Robin emphasises the importance of perseverance in finding support and resources, such as respite care and support from organisations like Carers Australia.
The webinar highlights the need for carers to find time for themselves and seek help when feeling overwhelmed. They suggest planning and prioritising self-care activities, even if it means making small changes gradually. They also recommend reaching out to social workers, local members, and support organisations to explore available resources.
Overall, the session highlights the importance of education, support, and self-care for carers of individuals with PAH, offering practical advice and resources to help manage the challenges of caregiving.
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