Producer and presenter Egon Cossou combines a busy job at the BBC with caring for his mother, who is blind, at her home in Edmonton in north London.
What are the biggest challenges and opportunities of caring for a loved one?
You don’t like to think of yourself as a carer because these are people you love and who have brought you up. An enabler is a better word, because a lot of it has to do with enabling people to live their best lives as they get older.
As a carer – or enabler – you feel that you need to be present, and not just for caring. This is not an experience that is purely about medical appointments or decline, it’s also about deepening the relationship with these people who, like the stars and moon, have always been there in your life.
I think you can lapse into taking your parents for granted as they get older but don’t make that mistake. Just dive in and spend time with them – because you can uncover some amazing personal stories and clues as to who you are.
Talking to my parents about their youth it seemed there was always this sense of adventure and discovery for them. There was always a party. Life was not easy as they didn’t have a lot of money, but there was always time for friends and finding out about the latest thing. Every day you learn something new about the person you are or about the loved one you’re spending time with.
What are the challenges of combining care with a career?
I work for the BBC in the business and economics unit and it’s a job with quite a lot of pressure. My father died in September last year, and so I moved back in to be with my mother who’s blind.
If you’re trying to balance an active personal life and a career with caring, there can be moments where you eventually drop one of the many balls you’re juggling. I eventually applied to work part-time and thankfully the BBC was able to accommodate that.
I’m aware though that not everybody is as fortunate in that respect – and, again, I’ve been lucky my parents are both entertaining, funny, basically selfless people. They are not going to be sitting around making demands. In fact, if there’s any sort of battle it’s around them accepting help and I have had to learn how to navigate that.
I work three days a week now and losing two fifths of my income has been hard. I’ve been able to do overtime so there’s flexibility there – but there was a time when I was doing quite a lot of overtime, and it just felt as if I wasn’t keeping on top of issues like chasing medical appointments or taking my parents out on nice trips.
Working part-time is not easy but I don’t think I would feel comfortable with anything else at this point. I feel so strongly that I need to be there to advocate on my mother’s behalf – to say to the GP I don’t think this medication is working or ask what’s happening with appointments.
How do you make sure your mother can stay independent in her own home?
My sister lives in Florida, so I am “the boots on the ground” here. My mother has carers who come in two or three times a day, and again, this is where I baulk at the description of care, because I feel like I am not doing an awful lot.
I sort out arrangements with the care agency or with the doctors and I cook the occasional meal, but I am not doing personal care. Instead, I’m doing things like saying, “It’s a beautiful day. Let’s go out” and adding value there.
My mother is very concerned though that I should be spending more time at my own home, and says to me,” You’ve got to reclaim your life”. But I wouldn’t feel comfortable sitting around my house in Peckham watching Netflix and knowing that she was at home alone.
Do you think there’s enough support for unpaid carers, like yourself?
I think as a society, we do not understand what is coming our way. There’s going to be a tsunami of people in my position in the future. People are living longer and getting older, both those who are being cared for and those who are doing the caring.
A lot of the focus in society is about how we raise our children, but what we haven’t quite understood yet is that at the other end of things there’s another growing phenomenon of care.
We have to appreciate and support the needs of people who are looking after elderly or disabled loved ones. As a society I don’t think we’re particularly callous. It’s just that we haven’t got it yet – and the focus is so much is on the other end of the generation scale.
What advice would you give to somebody starting to care for a loved one?
Firstly, understand that you are doing this out of love. Secondly, do not forget about yourself. As the details of the care that you’re providing begin to pile up it’s quite easy to forget about your own needs, dreams and desires.
You have to recognise you are a person as well, because if you collapse then they collapse too. Do not underestimate the power of the word “no” either – there will definitely be times when you’ve just got to breathe and reconnect with yourself.
What is the vision for your blog squarethecircles.com?
I’m looking to provide a one-stop shop for people who are trying to balance the needs of their elderly loved ones with their own needs, and perhaps those of their family and jobs too.
People will be able to get advice on things that range from how to navigate the care system to what technologies are out there to make your and your loved one’s life easier – for instance, my mum has become firm friends with Alexa and Siri.
It will also look at issues such as how to cope with the fact that you’re suddenly the carer, not the cared for, which is an inversion of the traditional parent-child relationship.
I want it to be a forum for people to share their own experiences too, because it can be easy to feel isolated and as if you’re the only person going through this kind of experience.
And although there are tough times in these situations, I’m keen for it also to be a celebration of the deepening and enriching relationships that you are rediscovering.
I’m hoping to get the site up and running by the middle of April and at the moment I am raising a ‘People’s Army’ of those who can contribute articles, viewpoints and blogs.
For example, I’ve got somebody who’s just written an article on the importance of having a sense of fun and encouraging your loved one to explore their creative side. Just because you’re elderly doesn’t mean you don’t deserve to have fun. In fact, I would say you’ve earned it.
What do you hope those visiting the site will take away from it?
I would like it to be a space where they can find out practical things that will make the job of balancing their life with that of their loved ones easier. But also, I want them to share their experiences, to get the joy out of this phase of life and of rediscovering who their parents are and how that has fed into who they are as an individual. It’s about balancing the challenges with the joys.
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