This is my story…
My husband, Roger, was diagnosed with aspergillosis in 2008 (although it wasn’t until 2016 that I saw any of Roger’s medical notes that gave a name to his condition!) but he was monitored locally. However his health gradually deteriorated and in September 2016 he started to cough up blood which culminated in him undergoing an embolisation procedure as a day patient. He had worked right up until the day before this but sadly got readmitted to hospital with postoperative pneumonia just a few days later and from this point on our lives changed forever.
Roger was referred to the National Aspergillosis Centre at Wythenshaw at the beginning of 2017 where he was diagnosed with Chronic Pulmonary Aspergillosis and began treatment with anti fungal medication. Sadly he never became well enough to return to work, was constantly breathless and continued to lose weight. He was being investigated for other possible causes of his deteriorating health when he suffered what initially appeared to be a stroke (although this was later discounted) in August 2017 and was swiftly admitted to hospital. He deteriorated quickly, became unresponsive and pneumonia took hold. He never regained consciousness and on the 15th August he had become just too weak to fight any longer and he passed away.
In those previous eight months, when Roger was so unwell, I never really thought of myself as his carer… I was his wife just doing everything in my power that I could to help the man that I loved with all my heart. I had never heard of Aspergillosis and did all the research that I could to learn more about the condition.
The website and the various Facebook support groups were invaluable in not only providing factual information and advice but in reassuring me that we were not facing everything alone. At times I felt totally overwhelmed and exhausted – I was trying to manage a business for my boss who was also terminally ill at the time, care for our two teenage children who were finding their dad’s deteriorating health equally difficult to cope with and keep the house and garden up together (jobs that Roger had always done previously) on top of looking after Roger’s needs and getting him to his various medical appointments!
With so much on my plate I also felt guilty that I couldn’t then spend more time just being with Roger (not that he ever complained, bless him) and this is something that I will always regret as I only know too well now how precious time together is. But for me the absolute worst feeling was the sense of helplessness. Yes, I was able to do lots to help Roger’s physical needs but I felt helpless on an emotional level.
Aspergillosis is such a horrible, debilitating disease for someone who has always been so active for all of his life (if he wasn’t at work he’d be gardening or doing DIY on the house) so sitting still was never in Roger’s nature! I couldn’t interest him in books, films, taking a drive out, having friends to visit and with no sign of his condition improving he became increasingly low. Seeing him like this, and being unable to lift him out of it, was by far the hardest thing for me to cope with. On what turned out to be his final day at home, before the symptoms of the brain disease suddenly struck and he was admitted to hospital, I remember wrapping my arms around his frail body and telling him how much I loved him to which he replied “but I don’t love myself” – it was heart-breaking to realise just how dispirited he had become.
Compared to many carers within this forum my role was shorter and less demanding, and I’d do it all again and more in an instant just to have Roger back with us, but one thing that I think we all have in common is that we undertake these roles out of love, not duty. The added support that forums such as these bring is absolutely invaluable – they provide reassurance that we are not going through this in isolation, support from others going through the same thing who help celebrate the positive news and provide understanding and encouragement during the more difficult times, together with a wealth of practical advice. And for this I shall be forever grateful.