Carer Story – Julie and Ronnie

Julie lives in Hove in Sussex near the seafront. She is a nursery nurse and is currently working at the Royal Sussex County hospital on the maternity ward but previously worked in the community for 26 years.

Her husband Ronnie, to whom Julie was married for 38 years, was a former naval serviceman. They have two daughters and a grandson whom Ronnie adored. Sadly, Ronnie died in 2018 having been diagnosed with COPD in 2014 but using HMV meant that he and Julie were able to enjoy several years at home together. Without it, Julie is convinced that they wouldn’t have had these extra years of living a relatively normal life.

As a smoker, Ronnie had been wheezy for some time before he was diagnosed but in

2014 he became poorly with a stomach issue and required surgery. He struggled with his breathing after the operation and was rushed into the ITU where it was touch and go whether he would survive. Thankfully he did but on returning home, it was clear that he had a problem and COPD was diagnosed.

Julie and Ronnie managed the condition for a year but then he started to need oxygen. The team at the local hospital recommended Ronnie for a home mechanical ventilation (HMV) trial at St Thomas’s hospital in London which meant having a non-invasive ventilator (NIV) at home.

At first, this was scary for them both. Ronnie was in a hospital bed surrounded by equipment and he hated being on the ventilator. He felt very claustrophobic and struggled with the mask fitting. Even as a nurse, Julie felt that she didn’t fully appreciate what Ronnie was feeling and she was frustrated when he didn’t want to use the HMV.

However, after 3-4 weeks Ronnie started to get used to the machine and to feel better after being on it. He was also able to move into the lounge and take part in more normal family activities, such as watching TV. After a while, he was able to go out with Julie to visit friends and stay overnight, and the couple were able to enjoy holidays in the UK.

As a carer, Julie had been concerned initially about the responsibility and had been worried about how she was going to cope – even with her background in nursing.

The couple bought a larger bungalow and one of their daughters moved in along with her husband and Julie and Ronnie’s grandson. Their other daughter lived nearby so was also able to help. Nevertheless, Julie reports that it was still daunting at the beginning.

She said: “It was really frightening in the early days. I wondered why we were doing this and thought Ronnie should be in hospital. But looking back, it changed our lives and meant that we were able to enjoy those final years together, living a relatively normal life.

“Before using HMV, Ronnie was admitted to hospital every few weeks but once he started on the machine, he didn’t have any hospital admissions and his care was managed at home. Having hated the HMV machine at the beginning, Ronnie died with it being his best friend.

“There is no doubt that it is intimidating at first, but I would say ‘go for it’ and don’t be afraid. My advice would be that if you’re a carer, try to talk to someone in a similar situation who has been through the experience. I think if I had been able to do this, I would have been less anxious at the beginning.”

Julie’s Carer Tips:

• If offered HMV, grab it with both hands and don’t be afraid, even though you will be at the beginning.
• Talk to each other and share how you’re feeling. I didn’t appreciate how difficult Ronnie found it to adjust to the machine.
• Be patient, it may take time to get used to using HMV but it’s worth it.
• Talk to another carer if you can, it helps to know about someone else’s experience.
• Don’t be afraid to ask questions and use the support of your healthcare team.
• Once the machine has become an invaluable part of your lives, take the opportunity to live as normal a life as you can.
• You need to be organised if you’re going out to eat, to see friends and especially if you’re going on holiday. Check where plug sockets are, take a spare of everything and take the number of your healthcare professional. If you’re using long term oxygen therapy (LTOT) check that you can use it in the venue.
• Enjoy the extra time which HMV gives you.