Talking with Bengi, a parent-carer, for International Women’s Day

Bengi is a mum of 2, wife and registered nurse. She cares for her 17 year old daughter Molly, and her husband.

I spoke to Bengi about her experience as a mother, carer and full-time employee.

Tell me a bit about yourself.

I am a mum to Molly and Leo, and wife to Anthony. I have been a registered nurse for about 20 years, working for a clinical commissioning group in the NHS. My role is around quality insurance and improvement, trying to make things better in health care for other people. I have been a carer for around 15 years.

I am also a carer for my 17-year-old child Molly. She’s autistic, has complex PTSD, and high anxiety. Sadly, because she has not received the help she has needed, she has ended up in mental health hospitals over recent years and it has caused her even more trauma, she is really suffering from her experience. 

I am also a carer for my husband, who has chronic health problems because of cancer treatment in the past.

Tell me 5 things about you:

• I love coffee. It’s my drink of choice and I cannot get enough of it.

• I adore horses and have one of my own. He’s my pride and joy. I also have 2 dogs and 2 cats.

• I love the colours purple and orange; they are bright and happy.

• I love being outdoors, either walking or gardening.

• I love reading poetry - Maya Angelou is favourite.

Does your employer know you are a carer?

Yes, they do now. Although to begin with, I felt as though I had to manage and cope by myself because I did not see myself as a carer. I was simply caring for my loved ones. It’s just what you do.

However, it all got too much, I ended up having a bit of a breakdown and suffered from clinical depression and anxiety. I had to take sick leave and was offered some CBT. It was then that I had to acknowledge I was a carer, and by reaching out, it actually lessened the burden on me.

When I let my employers know that this was part of my life and I needed support to help me manage it all, they were very understanding and supportive. It was the best decision I have ever made. I don’t know what I was so scared of? Maybe because of what people might think of me.

It’s not always easy and I still feel like a failure a lot of the time. When I need to take time off or burn out, I feel I should be able to manage it better.

But my employers and colleagues are always supportive and actually for me, it’s lifted an enormous burden by telling them and letting them know.

How did they support you?

Well, in 2018, I took a career break following a period of long-term sickness. Things were difficult at home and I could not do my work. They helped me work it out, so I did not lose my job. They also encouraged me to work for a charity as I wanted to do something and keep my skills going.

They supported me when I came back to work, by phasing in slowly. This was also when the pandemic hit, which meant a lot of changes. I could work flexibly and reduced my hours.

I am lucky to have a very supportive team. They are very kind; I get friendly messages from them; it makes me feel better when things aren’t going well at home.

I could feel very isolated. Most people are not carers so they don’t understand everything I am juggling.

As a carer, you do not have time off. As soon as I log off from work, I am needed at home. Maybe my daughter is up all night with anxiety or my husband is in A&E - it’s a juggling act and very unpredictable.

What impact did the pandemic have?

It was horrendous. The support my daughter was getting at the time just stopped altogether. No one did anything to support her emotionally or prepare her. Consequently, her anxiety shot up and her needs were enormous. It had a massive impact on me - at one point I could not leave her side. She was so distressed all the time and would self-harm. When we really needed professional support at the most, the professionals were not around.

My daughter ended up in A&E, which furthered her anxiety. She became self-destructive and ended up sectioned. This was a nightmare journey for a year, she was in awful hospitals around the country, sometimes a long way from our home. My husband also got worse as a result from all the worry.

I don’t know how I carried on working - it was so horrific. I have blocked a lot of it out.

My employers were supportive, but the professional support that should be available in the community disappeared completely.

I become everything: care coordinator, sounding board, counsellor, I was everything to everybody and was trying to hold down my full-time job. I don’t know how I did it.

Since then, it has been much harder to get services and waiting lists have gotten longer. To get support for my loved ones is almost impossible - it’s a daily fight and battle and I fill that gap because I love them. I do far more than I should whilst working.

What’s the biggest challenge you find working and being a carer?

You never get a day off. To keep up your stamina and resilience against adversity is very hard. To maintain your own health is hard.

As a mum, you naturally put everyone else before you. As a carer, that multiplies a lot. I have very little time for myself. I have learnt that I have to invest a bit in me or I will burn out.

It’s exhausting - and sometimes it can feel hopeless, there is no end to it. These caring duties don’t end, they go on forever.

It’s very true that you cannot pour from an empty cup and you have to look after yourself otherwise you cannot care for them.

Where do you go for support for yourself?

Initially, I found it very difficult to ask for help. I saw it as a failure - I should be able to do these things and I should not have to ask for help.

The first thing was to ask for help from friends and family. I was uncomfortable to begin with but what I found was they had been dying to help for a long time - they had seen I was burning out. They just did not know how.

Just to say to mum or sister - would you mind shopping or to ask for a lift was the first step. The next step was to open up to friends and talk about what I was experiencing. To be free to cry! You have to be so strong as a carer, you cannot show that you cannot cope.

There is hardly any professional support for carers - I live in survival mode, I have done for a long time and it’s exhausting.

Care relies heavily on families - its hard to get any support, whether that’s funding for carers to come and help, therapy, emotional support. We tend just to fund the crisis rather than offer the support so we don’t get there.

I fight every day to get the support my daughter needs.

Everything is a battle. It’s horrible having to beg for everything. And I work in health care - I know what good quality health care is and how to make improvements. There are so many failings in my area and it feels that no one cares. It’s frustrating.