5 Women On The Beauty & Burden Of Being Caregivers

Taking care of people is a fundamental facet of life: whether it’s for a friend, a loved one, a stranger or a pet. But there are many, many people for whom caring is not just something that comes up occasionally — it is their entire life.

There are an estimated 56.4 million in the US and 13.6 million in the UK caring for someone. This specifically means someone who is unable to perform the tasks and activities of daily life without help, such as the elderly, impaired, or long-term unwell. These carers are often, though not always unpaid, with deep emotional bonds to the people they care for. Many don’t self-identify as caregivers, because they are “just helping a loved one”. And our economies rely on this work: in England and Wales, unpaid carers contribute £162 billion to the economy every year, the equivalent of funding for a second NHS; in the US, unpaid carers’ work is currently valued at $600 billion.

We spoke to five women about their experience as caregivers for loved ones, their unseen labour, and all the ways it has shaped their lives.

Caring has always been part of my life. I grew up with my extended family, and my grandfather became disabled long before I was born. I knew no different, I was as young as seven helping look after my grandpa. When I was 21, my mother was diagnosed with stage three cancer, so caring came back into my life.

Everyday is a bit different. Normally I wake up, check on my mum, making sure she has slept okay and has taken her medications, I’ll make us both something to eat. Mum had to go to chemo everyday, so I’d help her get ready for that, then I’d start work. It was hard because it was just us. A lot of my day would be checking in on her, making sure she was okay. In the evenings, she’d make dinner if she was feeling up to it and we’d catch up on our day.  

My mum has never made me feel like I am responsible for everything, but it's hard not to feel that way. Sometimes that can be quite overwhelming. I get a bit anxious about the future because life has been quite unpredictable. I worry that workplaces won’t always understand that my priorities are different. I think, because of caring, I am not the best at regulating my own emotions and needs, because I’m really focused on just making sure everything is okay. 

My mum and I are really close and there’s a beauty in sharing this experience that might seem wholly bad, depending on how you look at it. The illness is difficult, but caring led me to moments of gratitude when we have good days, and hope for them to come again when I have bad days. 

People look at young carers and think we’re so strong. Sometimes I don’t want to have to be strong, or soldier on, but those are the cards I was dealt. We’re strong because we’ve had to be, and a lot of time I don’t think people understand the emotional impact that can look like stress, or guilt or burn out, it’s so important to acknowledge this.

I became a caregiver when my mum had an accident in 2020 that caused her permanent brain damage, and I started caring for my dad when he developed dementia in 2022. It was a sudden and life-changing experience that happened rather quickly. 

There really is no “average” day when it comes to my life. Every day is different. I get up, take my daughter to school, get my parents out of bed, make them breakfast and see how they’re feeling. Some days we run errands and get out of the house, just to get some sun and exercise. Other days, we stay at home, watch TV and play video games. People who have brain disorders have bad and good days just like everyone else. Every day I make all of my parents’ and my daughter’s meals, we spend time together and just make the best out of the day. 

Being a caregiver impacts my adulthood in many ways, but mainly my independence. I’m not complaining, but being able to travel, hang out with friends, or spend time with my daughter among other things have drastically been affected by caring. I don’t have the time I once did to do the things that are important to me, or WERE important to me. My priorities have definitely changed. But I enjoy spending time with my family and getting to know this new version of my parents and myself.

I think it’s common for people to think caregiving is scary, especially in the dementia community. Caregiving and people with dementia aren’t scary, just different and not what people are accustomed to. My dad is a lot happier of a person to be around after his diagnosis, so in some ways it’s a blessing. 

Conversations about caregiving need to be had. They are conversations that make people uncomfortable but can really open their eyes to the reality of caregiving and what it entails. It’s more than a job, it’s a lifestyle for some of us, and isn’t something we can just “clock out” of.

My only sibling is my nonverbal autistic epileptic twin brother and I'm a South Asian woman so caring for younger siblings is very normal. But I didn't label myself a caregiver until age 23. I was never told: you're a caregiver and this will obviously impact your personality, your career, your friendships, your relationships, your self care, everything.

When my mum was here, my dad would get my brother up, get him dressed, and then he'd go in a taxi to daycare, my dad and I would go to work and my mum would be at home. Since my mum passed at the end of 2020, my dad still does pretty much the main responsibilities for my brother. But we have a schedule now where we alternate who cares for him after work. 

You have to be very adaptable. I'm constantly factoring him in and building around him. In the pandemic I would be on work calls with one ear on the call and one ear listening out in case my brother has a seizure. I'd end up being quiet or on mute on calls, but not because I was lacking in confidence. It was difficult to explain my situation to others not experiencing it for themselves.

Caregiving makes you so aware, so empathetic, and you have this ability to be adaptable. There's so much you gain from it, but if you're not aware you're a carer, it's quite hard to unpick it.

Sometimes people say things like "I can't imagine what it's like", and I feel there's an element of laziness in there. There's always more that people can do to try and understand and show empathy. That aspect of being misunderstood is one of the hardest things, which is why I try to connect with other carers where I can.

We need recognition of the work that carers do and better communication about the support carers can access. There's a lack of information out there that people need to really know: if you're in this position you are entitled to support and here's how you find it. If you don't know you fall into that category, how do you know whether to ask for it?

I became a caregiver in my late 20s. My mum's friend called me. The only words I could make out from her were, "Something is wrong with your mum, you need to come home." 

While I was caring for both my mother and grandmother with dementia, the day often began with me taking a moment to myself to walk my dog. I then turned on a favourite show to preoccupy my mom while I changed my grandmother's undergarments and gave her the first sponge bath of the day. I then made breakfast for both, once both were fed, I'd start the phone calls that I needed to make for that day. Scheduling doctor's appointments, sitting on hold with the social security office, while intermittently helping my grandmother to the restroom after she was finished eating. The rest of the day was an amalgamation of that with a few variations of a physical therapist stopping by, or a paid caregiver to relieve me for a few hours while I went to the gym and did the grocery shopping. But it's very repetitive work, the more strenuous and taxing part is the emotional labor that one must do, especially as a dementia caregiver. 

Caregiving changes the trajectory of your life completely. It becomes a very lonely experience. But sharing my story on social media has given me the opportunity to meet many other caregivers like myself who thought they were in this alone. We've created a community of support. 

I believe that many people only see the physical labour and never take into consideration how emotionally draining it can be. You are consistently mourning the life that you could have had while also mourning the losses that come with watching a person you love slowly lose skills they once taught you as a child.

We need more regulation in care homes and memory care facilities. The employee turnover rates are incredibly high which means these locations are often understaffed, and paid private caregivers need more training in how to de-escalate combative patients. In the U.S., our medicare system pays for nursing homes but not memory care homes which leaves families with fewer options. And unpaid family caregivers deserve to be paid, especially when they have to leave the workforce.

I was around 12 when I became a caregiver. As soon as I knew about my mum's mental health difficulties (including bipolar disorder) it was a natural thing: you want to take care of your mum, you want to get her better.

There’s a misconception with school children that you can't be a full time carer at school, but you are because you're only at school for six hours a day. You are still caring as soon as you get home until you go to bed, sometimes during the night and all weekend.

Because I don't live with mum now, an average day is just being on call all the time. I go down there pretty much every day to help with smaller things and I go down once a week for a full day. I’ve always stayed nearby no matter what. I did my A levels and applied for universities but ended up going to Plymouth through clearance because I was just way too anxious to leave. I've just had my second baby and you don't get maternity leave as a caregiver. I didn't get any support in school for being a carer, apart from the fact that they allowed me to go home as and when. But I also needed more emotional support in going through that and not having a chance to be a child. People don't think that children can be carers for their mums or that they're not responsible enough, but when it happens to you, you're forced to grow up a lot quicker. So I was extremely mature in school, I was classed as having my head screwed on but it's not, it's just going through trauma and having to learn to take care of someone at such a young age.

But my relationship with my mum is just unbelievable. I've never experienced anything like it. The closeness and the trust that she has in me to be there for her in her deepest, darkest moments is just crazy and it's helped me as a parent as well. I know that as my daughter grows up I'll be able to be a lot more open with her and allow her to be a lot more strong.