The invisible impact of caring for a spouse
Content warning // Mention of s*icide
Caring for a loved one can change your relationship, for better and for worse.
John Lydon - also known by his stage name Johnny Rotten - has spoken out about his struggle with his wife’s dementia and transition to her full-time carer in The Sunday Times.
In a recent interview, John talks openly about the emotional strain that caring places on him as an individual but maintains his wife’s illness has had little negative impact on their relationship.
“You know, what's an illness between true friends, man and wife, lovers, whatever you want to call it? We are a proper pair of people who love and adore each other,” says John.
“You can, as a full-time carer, get quite suicidal. I will have moments that are overwhelmingly sad and, at the same time, full of rage. But things are what they are, and you have to take that and accept it and, sadly I've got to say, almost enjoy it for the experience.”
John tries to look on the bright side but admits in the interview that caring for his wife Forster - who he calls Babbie - has, at times, left him in deep despair.
Research shows that physical and mental health can decline for both people when one partner is caring for another. That’s why it’s crucial to look after your health as a carer, as well as your loved one.
“It’s important to move beyond the traditional caregiving model, which focuses mainly on how care recipient health stressors influence caregivers’ psychological health and better understand the reciprocal influences of both couple members.” - The Journal of Health Psychology.
While maintaining a healthy relationship when caring is involved can be difficult, it’s certainly possible with the right help and support.
On top of this, the idea of health isn’t always as black and white in a carer and cared-for dynamic.
In his interview, Lydon insists, "Bloody hell, she's so much fitter than me. [She] has always been an outdoorsy, gregarious, fun-loving, any-adventure kind of person. If we go for a walk along the beach, by God, she'd be out of sight in minutes.”
John also understands what it’s like to be cared for - he was cared for by his parents after contracting spinal meningitis, which left him with lasting health issues. This has given him a unique insight and appreciation of what emotions his wife is going through.
"What I have is floaters. Sometimes it is black dots that float around inside my eye; the others look like hair strands, so I'm constantly thinking my hair is in my eye, but it's not. [But] there's no way I can take a day out and leave Babbie alone just on some selfish [vision] problem”.’
Like many others, John neglects his own health problems because he sees taking time to address them would be “selfish”.
This spotlights an aspect of caring for a loved one that is all too often overlooked:
What happens when the carer has their own health issues?
“Especially in late-life marriage, it is rare for one partner to be perfectly healthy and the other partner to be dependent. Understanding mutual caregiving processes will help in the design of interventions that address both partners' needs.’ - The Journal of Health Psychology.
We need to understand how carers neglecting their own health to care for their loved ones can negatively impact both individuals and their relationship. While Lydon harbours no resentment towards his spouse, those feelings would be understandable given the difficult circumstances.
What is clear from John's interview is that he doesn’t identify as a carer but more a friend, a partner, and a husband with a sense of duty to care for Babbie.
He is not alone in this as it is a well-known fact that many people in a caring role do not identify themselves as carers even though they are.
The first step in providing meaningful support to carers is to understand what is really going on from their perspective as a carer.
Sharing experiences like those of John not only helps others to become better equipped to handle whatever is thrown at them but also guides the support and solutions Bridgit and partners can offer.
When was the last time someone asked you, ‘How are you feeling?’
We want to hear from you about the challenges you face as a family carer.
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