How social attitudes towards COPD affected my family
Lucy Dowle, wife and carer of the late Jay Dowle, shares her story on how social attitudes around Jay’s chronic obstructive pulmonary disease (COPD) affected her family.
Social attitudes mean people are reluctant to talk about their diagnosis
My husband died last October, aged 68. We’d been together for 48 years. In many ways it was a surprise: because his illness had lasted so long, I’d become used to it. In many ways it’s a relief. The first thing I did after he died was gather up the armfuls of drugs and medications he had and take them back to the pharmacy.
Guilt, shame, anxiety, depression – dealing with your mental health when you live with a lung condition like COPD can be difficult. The stigma attached to smoking means that many people are reluctant to talk about their diagnosis of COPD. For people like my husband, Jay, when they were growing up smoking was seen as a socially learned habit and a personal choice.
Not only was smoking accepted, it was glamourised.
By the time Jay eventually gave up smoking, it was too late. The damage was too great. Someone with COPD is often faced with years of gradually deteriorating health. This can put a great strain not only on the person but also on their family.
Jay was reluctant for anyone to know what was wrong
Because of attitudes attached to smoking and smoking-related conditions like COPD, which often don’t elicit much sympathy, Jay was reluctant for anyone outside his immediate family to know what was wrong with his health. He even kept it from me, his wife, as much as he could.
I noticed he made excuses to avoid walking any distances. If we travelled, he wouldn’t stay anywhere without a lift. He didn’t want to socialise with old friends, as he didn’t want to admit he was ill and have to answer the inevitable questions about smoking. Our sex life came to a halt.
All these things began to put a strain on our marriage and on our extended family, that could have been eased with some outside help. I turned from wife to carer. Jay avoided going to see his active 90-year-old father because he couldn’t walk as fast and didn’t want his father to know. Our children, who were not at all judgemental, found their father’s depression and self-isolation hard to handle. And there was no one for us to turn to for help.
There was no support for the rest of us
Jay signed up for clinical trials and enjoyed the attention he received from doctors and nurses interested in his disease. He joined a singing for breathing group and became very popular with other members - all of whom had lung disease of one sort or another. Only in that milieu did he feel comfortable.
But there was no support for the rest of us. I became resentful and angry at times. Instead of the retirement I had envisaged: travelling, socialising, enjoying doing things with our grandchildren together, I became a housekeeper. Our children were reluctant to spend too much time with their father as his guilt was contagious and left them feeling unhappy and confused. Our grandchildren learned not to ask to be lifted up or played with and regarded their grandfather with a wary affection. He would often just leave the room and sit by himself.
I began to feel guilty if I ran upstairs or went to the gym
Compassion is hard to maintain year in and year out. The sad truth is Jay was told he had blisters on his lungs when he was 40 years old. But he wouldn’t or couldn’t give up smoking.
You’d have to be extremely hard-hearted not to feel compassion when you see your loved one struggling for breath through pursed lips; unable to climb the stairs except on hands and knees, terrified of not being able to get to a lavatory in time when nature calls.
I began to feel guilty if I ran upstairs or went to the gym or displayed my own reasonably good health in any way. And I also had been a smoker – not a heavy one apart from a few years in my twenties, but nevertheless a smoker.
Later, when I went through his drawers, I found an advice pamphlet downloaded from the internet on how to deal with an angry and resentful spouse which made me feel guilty because we loved each other very much.
And I think if there was less moral condemnation of smokers and more support given to people with COPD and those who care for them, perhaps I would have found it easier to have been kinder more often.
Lucy’s story highlights why we need more support for people giving up smoking. Jay was a patient representative on the Taskforce for Lung Health. He hoped that the government and the NHS would adopt the Taskforce recommendations, to make life better for people living with lung disease. Find out more about the Taskforce for Lung Health today.