NZPAH Trust and Support Group

Supporting, educating and promoting awareness of PAH

Cilla’s Caregiver Story


Hello everyone, I am Sandy Edmondson’s daughter - Cilla and as one of her caregivers this is my story.


The year my husband passed away, Mum was diagnosed with PAH. It was unbelievable that after many years caring for others, my Mum now needed me. It would have been easy to feel sorry, find blame and wonder why- why now. Instead the reality of finally being diagnosed with something was a huge relief. It was the beginning of a life changing experience, not only for Mum but everyone around her. The need to educate ourselves, symptoms to look for, daily challenges to accept – a whole new journey had begun.


When you love someone, all you want to do is help them. When they suffer you feel their pain, frustration and would do anything to make things better. Thinking it was the right thing to do, we all wanted to surround Mum in kindness, do everything for her to make things easy. When in reality what Mum really needed was independence, ability to be herself.


It was difficult to step back but it was the right decision. Communication was the key, ability to ask for help when things became difficult. Basically doing all Mum could do for herself, for as long as possible. Team work allowed us to sort out jobs, things that created breathlessness to pacing everyday chores. Laundry was a huge task, Mum would put loads through and I would put it out and bring it in. (don’t ask about the ironing). When Mum gained wellness she could manage it for a while. Keeping her independence, enjoying the things she loved – cooking and yummy baking.


I am proud of how Mum copes with her PAH, it is not easy, and it is unfair and unpredictable. The fact that Mum enjoys travelling when possible and carries on with outings all with oxygen in hand is amazing. Her courage determination to live her life the best she can. There are down days, it is understandable, but Mums personality towards it is awesome.


Observation of the many visitors who call in home and stay for quite a while is fantastic because it shows they come to see her, not the home and how hectic it can be. What is even more special – you can arrive as a friend and leave feeling supported and cared about. Everybody cares; no one needs to feel alone with PAH.