Seven million carers in the UK; 42% are male.
Why do so few adult males looking after a partner, parent or other, access the social care support available to them? What difference are platforms like Zoom making during the pandemic?
We considered these and other questions with Kevin Goodman, a member of The Fed’s male-only carers’ ‘Purple Group’.
One notoriously hard-to-reach service-user group are ‘carers’, or ’care-givers’ as they are sometimes known – the seven million people in the UK alone – who care for a loved one who could not manage life without their support – due to illness or disability, whether mental, physical or both.
Often, they do not realise they are carers, seeing what they do as just part and parcel of the relationship of husband and wife, son and mother and so on – with the knock-on effect of missing out on exclusive benefits, rights and services for carers – including individual and group support offered by The Fed’s community teams.
One of the hardest categories of carers to reach are men. Whilst according to Carers UK, 42% of carers are male, they are far less likely than their female counterparts to attend carers’ support groups.
Why so? Because groups are predominantly made of up of females.
Recognising this fact, in 2015, David Clyne, zt”l, approached The Fed in his role of ambassador for the national carers’ charity, Carers UK. David was a carer for his adult daughter who has spina bifida. He wanted to discuss the idea of setting up a Jewish male only carers group.
Acknowledging the gap in services, the Purple Group, as its members named it, was established in October of that year and has been running ever since, facilitated by Fed sessional worker, Tom Griffiths.
Sadly, David passed away in recent years but the group continues to benefit local Jewish men from an array of backgrounds, caring for people with wide-ranging needs.
But getting people, who are currently caring for someone, to turn up to this and other support groups is as much of a hurdle as helping them realise in the first place that they are ‘carers’.
Groups have a habit of ending up being disproportionately overrepresented by former carers who, it is acknowledged, bring valued experience, knowledge and emotional support to others, while themselves being helped to make the often-painful adjustment from a life focused full-time on another’s needs, to one where they feel bereft and redundant.
Why do relatively few current carers attend groups? For one simple reason: they are too busy. The demands of looking after another person – especially if you are on call round-the-clock – mean that making time for yourself, and planning ahead, is almost impossible.
Going along to a group to meet people in a similar situation for mutual emotional support, the exchange of practical tips and advice and even a few laughs – however desirable and however beneficial – often relies on finding someone to stay with the person you look after (assuming they are happy about this) and affording to pay for that care.
Whitefield resident Kevin knows this more than anyone. He and his wife, Mandy, are both retired ‘operational researchers’. He carried out ‘mathematical modelling’, a term few of us had heard of in pre-Covid times but have become well acquainted with in recent months.
At 63, Kevin is a full-time carer for Mandy who turned 60 in November. She has two life-threatening lung diseases – pulmonary hypertension affecting the right side of her heart, coupled with another condition which results in pulmonary fibrosis.
She is on oxygen more or less continuously and can do very little for herself or around the home.
With Mandy classed as ‘extremely vulnerable’, the couple have spent the last nine months shielding – but Mandy remains as bright as ever.
During the interview she was sound asleep – worn out by a session of knitting a shawl for ‘The Big Knit’, a knitting circle which makes items for hospital A&E departments, baby units and care homes – including Heathlands Village.
She was first diagnosed in 2008 and eventually had to give up work in 2013. After gradually reducing his own working hours, as Mandy needed more and more of his help, Kevin too eventually retired fully three or four years ago. ‘I couldn’t concentrate on work and her,” he says. Looking after her involves all aspects of her personal care for example helping her shower, wash her hair, get dressed and undressed – everything exhausts her.
Alongside this he sees to the running of the house: the cleaning, tidying, shopping and cooking, the last of which he really enjoys, having once taken a nine-month sabbatical when he taught himself to cook, never realising how important this would one day become. He does it all willingly and with love – but that doesn’t make it easy.
Kevin joined The Fed’s monthly male carers group not long after it was set up and managed to attend a few times but gradually, as Mandy needed him around even more, it became too difficult for him to make it to the groups.
“It’s the nature of being a carer. You’re on call 24/7. It’s a known thing among carers – it’s hard to plan; to get out.”
Why does he think a group specifically for men is needed? We know that classically carers’ groups are dominated by females. Does that matter? Kevin thinks it does:
“I’m not being sexist. It’s about comfort. I couldn’t imagine myself attending a group with mostly or only women. I just wouldn’t be comfortable.
“I have male friends. I don’t have female friends. There are women I am friendly with, but this is always through Mandy.”
In this he reflects a view expressed by many male carers, but based on Kevin’s observations, few men are prepared to accept even male-only group support. Is this because they are too busy, or is there an additional reason?
In his opinion, “It’s not because men don’t do it (caring) – but they don’t seem to be as free with their feelings. Perhaps they don’t feel the same need to share. But it’s a worry. Mentally it’s a problem because they are not letting go.
“I think it is essential that more men know that groups like this exist.
“I think men are maybe afraid to come. They imagine it’s something that it’s not: we don’t get teary – it’s about camaraderie; being among people that understand your life and its difficulties and helping each other to find practical solutions.
“The emotional support is there but it’s not on the surface. It’s a very male approach. You just know people understand what you’re saying: they feel for you but they’re not going to cry for you.”
“My life is centred around my wife’s needs. I’m not complaining about that. But it’s why I need to share and discuss things with others who understand what it is like, rather than getting misguided advice from well-meaning friends and colleagues.
“People say ‘You need a break, a change of scene. Why don’t you get on the train and come down to London and stay with us?’
“They have no idea of the amount of equipment that would entail – bringing apart from luggage: oxygen tanks, wheelchair, rollator, scooter – it’s impossible!”
For Kevin the pandemic has surprisingly created a break in the clouds in terms of carer support. With most of The Fed’s community groups suspended due to pandemic restrictions, the Purple Group has taken itself online and increased its frequency, from once to twice monthly or more.
Zoom meetings have given Kevin greater access to the support he finds so beneficial, without stepping out of the house:
“I’m right here if Mandy needs me – just in another room – we both have the peace of mind of knowing she is safe, while I get the support I need – in fact more now than I have had in years!
“Once life returns to normal I, for one, will be advocating that we keep our virtual group going alongside the monthly meetings at The Fed. It just makes sense – for all carers’ groups – nothing to do with gender.
“The very nature of our role means we are often housebound, and our time is very restricted. I think staying online will mean so many more carers will be able to access support and advice.
“Zoom has helped to open up my world again. I hope it will for others too.”