Mandy recently lost her husband, George, who battled with complex medical problems stemming from rheumatoid arthritis.
After suffering for many years with what he thought were recurrent chest infections and pneumonia, George was diagnosed with rheumatoid arthritis after a work injury. Further tests with the specialist confirmed it was affecting his lungs with a secondary diagnosis of rheumatoid arthritis-associated interstitial lung disease (RA-ILD).
What is rheumatoid arthritis?
Rheumatoid arthritis is an incurable autoimmune disease that causes inflammation in the joints and surrounding tissue. It can also cause damage to the heart, lungs and nervous system.
George and Mandy’s journey
George’s condition declined from 2015 when he had to medically retire from work due to ongoing pain. Soon after, in 2018, he had a pleurodesis, which is lung surgery to glue the lung to the chest wall to stop it filling up with fluid (pleural effusion) and causing him breathing difficulties. By 2020 his condition had worsened, and he was put on the transplant wait list for new lungs. In late 2020, George ended up on life support in ICU needing an urgent lung transplant. Following his life-saving transplant, he spent a total of 266 days in hospital, 216 of those days were in ICU. While this was life saving it was also life changing in ways that George and Mandy could never have imagined or prepared for.
“An ICU stay has a huge impact on a patient both physically and mentally. George had a very complicated recovery and had to learn to breathe, talk, write, eat, drink, and walk again. Surviving the mental health impacts of his long ICU stay was just as challenging,” Mandy tells Bridge.
“George's recovery was all that mattered at that point and he was in for the fight of his life. I took extended leave from my full-time job to ensure I was there for him every day. He had delirium (a type of confusion often related to illness) on and off from being critically ill, the medications, lack of sleep and the ICU environment itself. He became very anxious, scared and overwhelmed. He couldn't talk, so he would write down 'Mandy is my voice, she is my advocate', and got frustrated when the hospital staff didn’t listen.”
He was so scared and anxious in ICU that he would mostly sleep in the day when Mandy was there and stay awake at night because he was worried about what might happen to him. “For example, I always had to check his medication, as he was allergic to a yellow colouring used in various medicines, it has quite a few different names and has been missed on occasion by the pharmacist and accidentally provided to him. So George always liked me to check them for him before he took anything new," says Mandy.
Even though George was in hospital, Mandy, as his full time carer, would spend all day by his side. As was George’s wish she would dress him, shower him, collect medications if they weren’t available in the hospital, wash clothing and assist with other personal care duties, as he was not comfortable with the nurses doing these things.
"I don’t think I have slept properly for four years," Mandy told Bridge.
Going home
George fought to recover and Mandy finally managed to get him home by finding a lot of the expensive equipment he needed second hand online. “I was always paying attention to the equipment they were using at the hospital. I would go home at night and search and search for a good price. I just knew for his own wellbeing I had to get him home where I could take care of him and our family could be whole again. I am a very dedicated and determined person who knew my husband wanted to come home, so I made sure it happened.”
George eventually, with lots of time and effort from both him and Mandy, was able to walk with a walker at home and get out and about in a wheelchair even with his ventilator (breathing machine). They loved going fishing, going to the football to watch the Brisbane Broncos and going for walks by the beach with their 15-year-old daughter.
It wasn’t easy for George to accept Mandy’s help, and it wasn’t easy for Mandy. Physically and mentally draining—caring for George was a 24/7 job. “In the last six months, he had to have his feeding tube connected at midnight and off at 6am, as well as driving him to dialysis appointments (treatment to remove waste and fluid from your body when your kidneys don’t work), other medical appointments because he was under so many different teams. Often I had to raise things with various teams as they got missed in the grey areas of which treating team they fell under."
“Caring for George was different to the way life was before his transplant, and it was hard, but it became normal for us and I don’t regret one second of looking after him as it kept him at home and out of hospital allowing us to be together as a family,” Mandy recalls.
Continence
George ended up needing dialysis three times a week once discharged from hospital, so he became anuric (no urine production). After George’s transplant, he was often on multiple antibiotics from infections which impacted his digestive and gut health requiring the use of faecal incontinence products.
There were also occasions where George had acquired c-diff which meant he had to use a separate bathroom and Mandy had to use protective mask, gloves, gown and sporicidal disinfectant wipes to clean the bathroom.
What is Cdiff (Clostridium difficilecolitis)?
A bacteria that causes diarrhoea and can be life threatening. Often caused by antibiotics disrupting balance of gut bacteria or transmitted person to person via unwashed hands or surfaces.
Tips for managing continence at home
In the past few years George’s mobility declined, and he needed an air mat on the bed and was awaiting a suitable zero gravity recliner with an air cell pressure relieving cushion to prevent pressure sores and reduce discomfort from pain. "To help avoid breakdown of his skin from faeces against his skin and friction from the continence aids, we used Molicare wipes and Cavlion spray and ensured all dressings (eg: sacral dressings) were removed with a spray adhesive remover like Brava to avoid skin tears."
"After trying many incontinence products we found the Tena active fit pants in conjunction with the Tena Duo protection layer best suited George's needs both at home and when we went out."
Funding
Mandy and George struggled to access financial help with continence aids and other medical products they needed to care for George at home. Mandy had searched endlessly and fought through all the red tape to apply for every support possible. Eventually, Mandy was able to submit a NDIS application for George which was initially rejected but with persistence, an internal review, and support from George’s treating teams it was approved in late 2023.
“It wasn’t until we had a Support Coordinator with NDIS that we found out about getting a continence assessment and how we could use the NDIS funding to help with George’s incontinence needs (ndis.gov.au/participants/using-your-plan/who-can-help-start-your-plan/support-coordination/finding-support-coordinator).My advice for carers would be to use services such as the carergateway.gov.au to find out what supports and funding you may be able to access. There is help and support out there, finding it is just hard when you don’t know where to look and have limited time to research."
“I just hope that our experience wasn’t in vain and telling our story can help other people who are going through it,” said Mandy. While caring for George full-time and raising their daughter, Mandy commenced studying her master of rehabilitation counselling and will use that going forward to help other families.
Life after caring
Sadly George’s health took a turn for the worse in 2024, after 12 months of antibiotic treatment for nontuberculous mycobacteria lung disease and having a heart valve replacement. He had to have a nasal gastric feeding tube as he was unable to meet his nutritional requirements due to ongoing nausea and vomiting. George’s passion for life kept him fighting on, but he sadly contracted a bacterial infection causing sepsis and he passed away peacefully surrounded by his family in December 2024 at the age of 64.
“Becoming a carer is hard, but stopping being a carer is harder.”
“Once the person you are caring for passes away, suddenly life goes from 24/7 caring for your loved one to nothing. There's a huge part of you missing and you are left with unimaginable grief while surrounded by all the medical equipment and supplies that we fought so hard to get and were essential for everyday life but now don’t need anymore."
For information and support with grieving visit griefline.org.au
Call the national continence helpline for support and advice on caring for someone with incontinence 1800 33 00 66 (8am-8pm AEST Mon-Fri).