Tony and Sue

Tony kissing Sue at a fundraising running event

‍Many people care for loved ones with pulmonary fibrosis. Tony, in his fifties, gave up work and now cares for his wife Sue who has IPF. Sue is on anti-fibrotic drugs and currently being assessed for a transplant. Tony reflects on his experiences.

Sue became ill in her early fifties with pulmonary fibrosis. Very quickly life changed for us. We’ve been together since we were teenagers.  We were devastated when we received the diagnosis of IPF.  

I’m always reminding myself that Sue used to be able to do everything and now she can’t I have to be an extension of her. She still has the same strong opinions, emotions and aspirations.  I’ve learnt to be more patient, tolerant and understanding. 

Caring simply means you just help them achieve whatever it is they want to do

Being a carer for your partner pulls on the heart strings and tests all the bonds you have relied on throughout your life together. I feel empowered by understanding the disease and treatments.

Love comes in many forms and being a carer is just another way to show it

As an engineer I know all about gases and now I’ve included oxygen management to the list. I learnt all about the meds and what they can do and cannot do.  We have had lots of support.  Sue’s Respiratory Nurse has  been amazing. She’s gone well beyond her role to support us.  We’ve also become involved with the APF support group which is great for connecting with and helping others.  

We’re fortunate we have three grown up children who we are very close to. They come and visit us a lot and we all go out together regularly. They’re totally engaged and understand the illness - we regard ourselves a one big team. Unfortunately, financial support for carers is lacking.  My entitlement is the carers allowance of £66per week. This does not reflect the role of the carer.

We top up our income from our savings and our pension. We were also not entitled to any help with modifying our house so we sold our home to buy a bungalow which is more suited to our needs.  

It helps me to be doing something to aid wider research and awareness. I’ve always been a reasonable communicator and leader at work.

I now use my skills to help us and others affected by pulmonary fibrosis alongside raising awareness and funds for APF.

I now use my skills to help us and others affected by pulmonary fibrosis alongside raising awareness and funds for APF

More importantly, keeping updated on treatment and support developments has allowed us to get accepted for previously declined treatments.  Caring for Sue is a choice I made and was happy to do so - I know she would have done the same for me.

We make every day count; we spend quality time together, we try to laugh, we talk a lot, we make plans and we have aspirations for us and our family