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What it feels like to be a carer

Sita, Monika and Divya tell us how it feels to look after a loved one who's been diagnosed with a lung condition. 

Anyone can become a carer. You may realise that you’ve gradually become a carer, or it may start overnight. In this blog, carers of people living with lung conditions explain what it feels like to be a carer and their ways of coping.

Sita and Calvin

Sita looks after her husband Calvin, who lives with mesothelioma

Sita realised things had changed soon after her husband’s sudden diagnosis with mesothelioma.

"Being a carer is sometimes wonderful, intense, a very special relationship. But also exhausting – it never stops.”

“You start thinking ‘I can’t imagine how we’re going to live like this’. But time passes, and you do learn to live with it. It was a bit of a relief to be recognised as a carer so I could talk to the medics and they would talk to me.”

And it's changed her. “I have learned to take any help anyone will give, which was hard for me at first as I am a very independent person.”

She has found it challenging to juggle caring for Calvin, working and running the house. She now has help with cleaning and gardening. She finds being a carer “sometimes wonderful, intense, a very special relationship. But also exhausting – it never stops.”

“Sometimes my difficulties seem unimportant compared to what he’s going through. It’s all strange. Guilt can be a big part of my feelings, as sometimes I feel torn between caring for him, being there for the rest of my family and keeping on top of my work.”

Sita has had counselling and found that helped her.

What does she do to cope? “You need a little something that’s about you. Once a day I go to the sofa in my study, light a couple of candles and sit quietly for 10 or 15 minutes. Sometimes I can feel the tension ebbing away.”

Chris and Monika

Chris was diagnosed with COPD 12 years ago. 

For Monika, caring for her husband, who lives with COPD, came about more gradually. Chris was diagnosed 12 years ago. Neither of them had any idea what that meant.

Over time, Chris’ illness has completely changed both their lives. Now Monika does absolutely everything round the house. This was a big change, as they had shared responsibilities. Monika says: “He runs out of breath so easily. Even getting dressed is a major production.”

“Chris says COPD stands for Can Only Plan Daily. From a carer’s point of view, that is the most difficult – I can never plan anything in advance.”

Getting to know all about COPD has helped her care for Chris. She has encouraged him to keep active – even carrying his oxygen tank when it got too heavy for him.

She has built up a good support system with family, friends and neighbours. “When a lightbulb goes that I can’t reach, my neighbour can!” says Monika. She often calls on friends and family to help.

Monika has less time for herself, but she makes the most of it. “At night, when Chris is asleep, I read and listen to music. And every six weeks or so I meet my friends.”

It’s her choice: she’s clear her prime objective in life is to care for Chris. Everything else is secondary to that.

Divya and Lalita

Lalita and Divya with their family

“At the time, I didn’t think of myself as a carer. I was helping my mum, my friend."

Divya’s mother, Lalita, was diagnosed with IPF in 2008. This was a shock to her family. Her mother was an independent woman who had worked most of her life and loved cooking for the family despite having heart problems. In 2014, Lalita was diagnosed with Alzheimer’s.

“At the time, I didn’t think of myself as a carer. I was helping my mum, my friend with whom I’d shared wonderful times.”

“The whole family helped look after her,” says Divya. “My parents decided to live with my brother who adapted his house to make things easy for my mother. My father was initially her main carer with the help of my brother. My sister and I helped.”

“We worked as a family to keep her at home, with a regular routine. We focused on keeping her active and arranged for a physiotherapist to visit every month who would set exercises for Mum. We all knew the importance of Mum doing her exercises every day, even if for just 10 minutes.”

Now Divya reflects and sees that caring took a lot of effort and energy. “We were lucky that the whole family agreed to look after Mum. We knew what we wanted and we made it happen. We planned carefully and we were able to pay for care when my mother needed it. There were tensions sometimes, but we kept talking and got things in perspective.”

Sita, Monika and Divya helped us develop new information for carers. You may also be interested in Maxine’s story. She is a wife and a carer for Ron, who lives with IPF.

More information for carers

Call our helpline

 

If you're a carer for someone with a lung condition, and you need information, advice, or simply a friendly chat, we're here for you. Call our helpline from Monday to Friday from 9am to 5pm on 03000 030 555. 

 

 


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30 November 2018