All names and identifying details other than that of Zoe Guerrier have been changed for the purposes of this article to protect client confidentiality.
To mark Carers Week 2020, The Fed’s Marketing and Communications Manager, Joyce Khan interviewed north Manchester Jewish carer ‘Helen’ who looks after her husband and adult daughter.
Both have autism and other chronic health issues. Caring for them in a time of Covid-19 is taking a toll on her own mental health, but fortunately, she is well supported by Zoe Guerrier – one of The Fed’s Community Advice and Support Team.
‘She is fantastic. I literally don’t know what I’d do without her.’
Helen and husband Anthony are retired professionals in their early 70’s. They live in a modest home with Leonie, their unmarried daughter who is in her mid-40’s.
The couple are not originally Mancunians, in recent years choosing to leave behind longstanding friends and the community they had lived in all their married life, to follow their married children to Manchester and ‘be nearer them and the grand-kids’.
Helen is a “double” carer: ‘Anthony has always been liable to get upset and fly off the handle irrationally, but I’ve always been able to forgive him because he is basically a kind man. But his mood issues got appreciably worse after he lost a parent and one of his closest friends within a few weeks of each other in 2003′. This changed my life in every which way. Since then he’s suffered from a debilitating depressive illness and has not been employed for many years – due to this and his age.
‘His depression has got worse over the years and has drastically affected relationships within the wider family as people could not understand his difficult behaviour. It ended up depriving me of regular contact with certain loved ones, or opportunities to build new relationships. If he didn’t like someone – whether family or friends – he would make it clear that they were not welcome in our home and I would have to find other ways of seeing them.’
Leonie’s autism affecting her responses to light and sound, meaning she is hypersensitive and can be overwhelmed by sensory input. She also has an associated physical condition which leaves her almost constantly weak and tired and makes employment impossible.
Her issues have not worsened over time. In fact, in one respect things have got better since moving to Manchester, where Helen has found the medical services to be much better: Leonie was finally diagnosed, and Helen came to understand how the light was flooding her senses. She had never told Helen about this, assuming this was how it was for everyone.
Life for Helen is far from easy at the best of times. Both her husband and daughter rely on her heavily for their physical needs, and in the case of Anthony, for his psychological and emotional needs as well.
‘He needs me for almost everything. He’ll tell me for example if something that needs putting away in the kitchen – but can’t think to do it himself. It’s as if he’s lost his motivation or initiative for even the simplest practical task. He used to cook. Now he can’t boil an egg.
‘He clings to me emotionally. He has lost much of his self-belief. It’s so sad for him. He’s such a good-natured, caring man. I have to bolster him constantly.’
Anthony’s autism manifests especially through his obsession with particular topics. ‘He follows me from room to room talking at me incessantly about his interests. Sometimes I want to run away because I just need some peace. The only time I’m sure to get that is when he is asleep.’
Whilst sweet-natured, clever and surprisingly well-tuned into other people’s needs, Leonie’s conditions mean that she us unable to cook, do laundry, clean or do anything else to help around the house.
Life in a time of Covid-19, has for many people magnified their relationship difficulties. We hear of lockdown increasing the incidence of domestic abuse and anticipate an upturn in divorce rates. Likewise, for carers, particularly of those sadly suffering from long-term mental health issues, the strain has intensified beyond measure. Cooped up in confined space 24 hours a day tension levels for carers are hitting the roof.
Helen explains how it has impinged on her life: ‘When lockdown was announced I was in total shock that my liberty was being so restricted, but I didn’t realise the impact it would have on me at first. I was hopeful that it would just be for three weeks. But the impact grows the longer this goes on. Now after two months I’m feeling more desperate and I’m getting headaches and feeling weak and tired which I’m recognising as symptoms of depression.
‘I used to be able to get the bus to Costa and take my computer for a couple of hours. I’d get my balance back and go back home refreshed. It kept me going. But everything is magnified in lockdown and my husband has become clingier than ever. We were just about managing by going out once a day for walks.
‘Then he got a letter from his GP saying he mustn’t go out at all. I thought he’d be like a caged animal and I would crack up completely. I just didn’t know what to do. I emailed Zoe at The Fed at 4.00am one night. She called me the next day and calmed me down. She gave me very practical tips about going out in the car just for a change of scenery and taking a daily walk because of my husband’s mental health needs. She offered to explain my situation to anyone who challenged us for being out of the house.
‘It may sound silly, especially for a woman who had a responsible career over many years – but the stress of caring means I can’t always think clearly. Having someone kind and wise on the outside of my situation to give objective advice is absolutely invaluable.
‘Zoe has helped me in countless other ways, not only providing advice about coping with Anthony’s behaviour, not only listening to me when I’ve needed to vent my feelings, but she also knows an enormous amount about autism and has sent me a lot of information to increase my understanding.
‘She intervened when I heard nothing about my application for a carer’s personal budget and I got a decision within 24 hours of her contacting the authorities.
‘She is helping us apply for attendance allowance for Anthony. She’s diplomatic and discreet but she also lifts my spirits with a laugh and a joke.
‘In short, she’s keeping me going through this crisis – well her and Skyping my grand-kids!
‘I don’t know where I’d be without her!’
Who is a ‘carer’?
There are 6.5 million people in the UK who are carers. They are looking after a family member or friend who has a disability, mental or physical illness or who needs extra help as they grow older.
National Carers’ Week
National Carer’s Week is from the 8 to 14 June and more information can be found here https://www.carersweek.org/about-us The theme is ‘Make Caring Visible’ which recognises that this year, people across the country facing new challenges as a result of the coronavirus outbreak with many are taking on more caring responsibilities and experiencing greater difficulties. They deserve respect for all they are doing and to be provided with information, support and understanding.
The Fed provides support, advice, guidance and information for carers via its Community Advice and Support Team (CAST) and Volunteer team. Should you or anyone you know need our help please email advice@theferd.org.uk or call 0161 772 4800 – Community Services – option 2.