I became a full-time carer on 22 December 2004. I didn't know it was going to happen; with my fourth child on the way I'd planned on continuing as a working mum, juggling the school run with the demands of the office. Daisy had other plans. She was born two months prematurely, and a few months later we were told that she had a very rare, life-limiting genetic condition called Costello Syndrome.
Caring for Daisy is bone-achingly exhausting, and as she gets older it gets harder. It's not just physical work, it's emotionally and psychologically draining. There is little respite: putting up the intravenous drip that provides all her nutrition 24/7, administering intravenous infusions, changing catheters, dressings and stoma bags - these have to happen day in, day out. However, in many ways her medical needs are the easier part to cope with, because although time-consuming, they are predictable (although we do make regular blue light trips to A&E with her).
Daisy also has a learning disability and she can have quite challenging behaviours when she can't fully articulate how she feels or becomes overloaded with too much going on. Coupled with this, both my sons have been diagnosed with High Functioning Autism, and looking after them demands a lot of emotional input; I'm always on red-alert for situations that could cause anxiety or meltdowns.
In the middle of all of this has been my daughter, Xanthe. As a young carer she has been there in so many ways for our family, supporting the boys and bringing some sisterly normality to Daisy's life as they watch YouTube videos together and take selfies.
When we first found out that Daisy had complex disabilities I went through a whole range of emotions. I mourned the child I thought I was going to have, and felt immense guilt at the huge change I had brought to our other children's lives. I had to get to know this new child, in a new world where I had a new role.
When Daisy was born my successful marketing career ended almost overnight. It became obvious that Daisy would need a lot more care than an average newborn, so I gave up work and my husband, Andy, helped as much as he could around his work commitments. Life as we knew it changed immeasurably. I had to juggle looking after my three other small children - aged seven, five and two when Daisy was born - with adjusting to this huge change. I took on the roles not only of mother and carer, but also of her advocate, fighting for her and making life-changing decisions on her behalf.
My life since Daisy was born has been all about keeping the plates spinning as we lurch through medical crises, diagnoses and a multitude of curveballs. As Daisy's health has deteriorated over the past few years, I have learnt to go with the flow. However, our family was completely knocked for six when Andy, my partner of 27 years, was diagnosed with advanced, incurable colorectal cancer in November 2015. He became ill very quickly and was unable to work or help with Daisy's care. My already full-on workload went into warp drive as I juggled Andy's chemo appointments and hospitalisations with Daisy's care and the needs of my other children. Andy passed away just before Christmas last year and I have found myself with another role, that of widow and sole parent.
It is very important for me to make space for myself. I had a life before children. I had a life before becoming a full-time carer. I am more than mother, wife, carer, widow: I am me. I started running again a few years ago, something I had given up not long after my eldest son was born, and training with my running club has given me a social group where I am just Steph. It has also given me the physical strength I need to manage the lifting, carrying and running around that goes with looking after Daisy. Most of all it gives me the emotional release I need to cope with the stress of my life and the grief at losing Andy. I have been pushed to my limits in many ways but I am determined not to let it define me. I want my children to have a life and happy memories, regardless of everything that has happened to us.
I write about my life because I want people to understand that any one of us, at any time, can become a carer. It is a world I had no knowledge of until Daisy's birth, but any one of us is only an accident, an illness, a gene mutation away from becoming a carer. It is certainly not an exclusive club.
6-12 June marks Carers Week - an annual campaign to raise awareness of caring, highlight the challenges carers face and recognise the contribution they make to families. For more information, visit their website.
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Guest post: "As a carer, I have been pushed to my limits"
MumsnetGuestPosts · 07/06/2016 10:35
I'm a full time carer for my disabled DS. It is utterly exhausting and all-consuming. I can really relate to the OP and I don't think there is enough understanding of how any of us could end up in this situation (not just having a child born with a genetic condition, but also having to be a carer for a child becoming disabled through accidents/illness later in life).
Women are berated for giving up work and being dependent on a partner or the state (in my case) when childcare simply isn't an option for many of us, and the work we do as carers is far beyond the demands of ordinary parenting. I didn't have much of a career before having DS as I had him young, and now he is settled in SN school I'm being questioned why I'm not looking for work in school hours. Well, for me that is the only time I can get out to go for a swim, to get a haircut, have a coffee with friends, have an eye test. So I'm not going to give that up to be stuck in a supermarket or office all day and then face the stress of trying to run errands with a disruptive and challenging child in tow.
for your DD Viloot
mixedpeas I was in your situation it's frustrating. I eventually got a part time job and had to stop as dd was ill all the time and had to have numerous hospital trips etc. Actually I got fired but I don't tell people that! I had no choice she came first obviously. Thank you for the and same back to you for doing such an amazing job with your ds.
powerful post. I became a full time carer to my DP a year after he was diagnosed with a rare dementia at the age of 57. I worked on auto pilot with uncompassionate bosses for a year until he had a strangulated hernia over Christmas and required an operation. Overnight I could no longer face leaving him alone all day and the stress resulted in me being signed off work by my GP in January this year. Our lives are very different now, money is tight but I am more relaxed knowing that he has company during the day and we are able to take part in activities that help keep him stimulated. We have tough days but I'm glad to have the time with him. It's so important to take time for yourself in a caring role - if you don't look after yourself you won't be able to look after your loved one. Take care OP.
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