Mothers caring for children with a life-limiting condition
Caring for a child with a life-limiting condition presents immense challenges, particularly impacting the mental and physical health of mothers.
Research shows that mothers of children with life-limiting conditions face significantly higher rates of physical health issues and mental illness, compared to other mothers.* However, despite these challenges, these mothers demonstrate extraordinary strength and resilience every day. This Mother’s Day, we celebrate their dedication and the powerful role they play in their children’s lives. Their love, commitment, and selflessness highlight the incredible strength of mothers who rise above adversity with courage and grace.
In the UK, over 86,000 children are living with life-limiting conditions, and their mothers show incredible determination and perseverance as they take on the dual role of both parent and full-time carer. Despite the overwhelming demands, many mothers continue to navigate this journey with courage, though it’s important to recognise that their emotional and physical needs also deserve attention. However, these can often go unnoticed, as most healthcare services tend to focus primarily on the child, leaving the broader needs of the whole family, particularly the mothers, unaddressed.
Jessie May, a Bristol-based charity providing children’s hospice care at home, understands firsthand the impact this can have on the entire family. This is why Jessie May supports the whole family, recognising that the well-being of the parent is just as important as the child’s care.
Reagan, a mother supported by Jessie May and the mother of Alessi, who has a life-limiting condition, shares her experience: “I am now Alessi’s professional advocate and medical mum, but I didn’t sign up for this. It takes a lot of mental strength to take on that role. You do it because you are their mother, and I would do anything for any of my children, but mentally taking on the responsibility of keeping her alive, every moment of every day, is overwhelming. She relies solely on me, and as a single medical mum, it adds an extra layer of strain and stress that I can’t easily share or offload.”
“However, I do find myself venting to my Jessie May nurses – by the time half the visit is over, I’ve spent most of it talking at them! They are amazing and always make me feel heard, offering advice and support whenever they can. The one thing I do struggle with is the lack of help from other services and companies. I rely heavily on the two Jessie May visits each month to get some time for myself, which is really important for my well-being.”
Reagan also shares the physical strain that comes with caring for a child with complex needs: “The physical effects of caring for Alessi are constant. She has extremely high muscle tone and is rigid, so I am always lifting, carrying, and supporting her to maintain a safe posture. Over time, the repetitive strain has led to scoliosis and a twisted spine, which now requires weekly chiropractor visits. I’ve also had to adjust to sleeping on the sofa four nights a week due to the lack of space for Alessi’s specialist equipment, which adds to the physical toll.”
Not only can caring for a child with a life-limiting condition affect mothers mentally and physically, but in some cases, it can also lead to relationship breakdowns between parents. A study found that 64% of divorced or separated parents cited having a child with complex needs as a reason for the breakdown of their relationship, and 75% had no access to short breaks at that time.* However, with the right support systems in place, such as respite care and family services like those offered by Jessie May, parents can continue providing the care their children need while maintaining their own well-being.
Reagan explains: “Having a child with complex and life-limiting needs like Alessi put a massive strain on our relationship; it changed me as a person and contributed to our family breaking down. Then as the mother, I was expected to be the one to stay at home while dad continued working. But, I’ve put my all into being the best mum. Luckily, I have amazing friends and family who are mine and Alessi’s biggest cheerleaders, along with my Jessie May nurses. They remind me of what I do and how well I do it – and not all children are that lucky. They know when I need a little pick-me-up, fix my crown, and carry on.”
Being a mother to a child with a life-limiting condition is one of the most rewarding roles, though it often requires sacrifices in other areas of life. Many mothers find that their primary focus shifts to providing the best possible care for their children, which can lead to career adjustments or stepping away from work. Research shows that one-third of mothers caring for children with life-limiting conditions choose to leave their jobs to dedicate themselves to home care, and 37.1% continue to juggle employment alongside their caregiving responsibilities.* While these changes can be challenging, the ability to support their child through every moment is a reflection of the incredible strength and love these mothers have.
Reagan relates: “As much as I love being a mum and Alessi is honestly my world, caring for her has definitely impacted my career. Before having my daughter, I was Cabin Crew, a job I absolutely loved and couldn’t wait to return to (after enjoying my maternity leave, of course). However, when things took a turn at birth, it was at that point I knew my life would change forever. I am now known as a carer, not just a mother or cabin crew. If I had more support for my child with a life-limiting condition, I feel like I would be able to return to my career with some reasonable adjustments, but currently, this is not looking doable. I think this contributes to not feeling like myself and losing ‘me’ a little bit. I will be gutted to have to resign.”
As we celebrate Mother’s Day, it’s important to recognise the incredible strength and resilience of mothers like Reagan, who face vast emotional, physical, and financial challenges which are often overwhelming. It’s crucial that more support and recognition are given to mothers who care for children with life-limiting conditions. Supporting charities like Jessie May plays a key role in providing that help. By helping them, you’re ensuring that families like Reagan’s receive vital care and support. This not only benefits the children but also supports the well-being of the entire family, allowing both the child and parent to receive the care they need. With your support, Jessie May can continue to provide essential home visits, respite care, and emotional support, helping mothers like Reagan navigate the difficulties they face every day.
For more information about Jessie May and to find out how you can support mothers and families like Reagan’s, visit www.jessiemay.org.uk.
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