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Guest post: "As a carer, I have been pushed to my limits"

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MumsnetGuestPosts · 07/06/2016 10:35

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.

OP posts:
imjessie · 07/06/2016 11:14

I feel your pain, I have a son with a genetic condition . It's exhausting !

VilootShesCute · 07/06/2016 11:33

Oh Steph that was really well articulated. I was a full time carer for my daughter for many years. She passed away when she was nine. It is one of the hardest things I've done in my life.

mixedpeas · 07/06/2016 16:06

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.

Flowers for your DD Viloot

imjessie · 07/06/2016 16:31

Agree with all of the above .. I'm shattered most of the time and when my son is at school I like to sit in silence when I'm not at the gym or running errands . It's the only time I get to myself .

VilootShesCute · 07/06/2016 18:09

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 Flowers and same back to you for doing such an amazing job with your ds.

Questionsmorequestions · 07/06/2016 18:30

Remembering too all the elderly people who are caring for their partners with minimal support. They are often cash poor and there seems to be very little out there ; or what is available is unsuitable .

PirateFairy45 · 07/06/2016 21:18

I want to hug you and help you

Honestly I'm not sure I could cope. You are by far a very strong woman. I really do admire you.

gluenotsoup · 07/06/2016 22:33

This is exactly how I feel, and beautifully articulated. My daughter has a genetic condition, also one of the more rare rasopathies. The OP really touched a nerve as we have never met another child with the same condition as dd, and only one other child with the similar Costello syndrome. Being a full time carer in this situation is exhausting, and little understood by many in society due to its complexity and the way in which it isn't given a high profile, and little recognition of the daily struggles and sacrifices made by normal parents thrust into a life where the rules have been changed.

Klaptout · 08/06/2016 00:56

Steph, you articulate very well all the different parts of being a carer and more recently a widow.
I'm carer for my 3 who have autism, there's lots of support groups, books and courses on autism. So very much harder when you have a rare disorder.
Do you get much support?
Does Daisy sleep? It's hard if can't switch off and sleep
It's harder when you are the sole parent, no one to bounce ideas off, to share the care,no one to stand in when your not feeling so well. it's a huge responsibility.
I've been widowed 8 years, my DH had a brain tumour.
it took a lot of sorting and help from our MP to access a support package for my three, I had struggled way to long in the belief that I should be the only one looking after them, in hindsight it wasn't the best way of doing it, after all caring is long term thing.
The lack of sleep and responsibility fatigue pushed me towards sorting it out
Although my three are now young adults, developmently they function at a much lower age, they go to a SN college.
I don't know if you have come across WAY widowed and young, they are a great bunch and through them I have gained some lifelong friends.
I hope you get to carve out some time for you, to recharge, it's important.

Devilishpyjamas · 08/06/2016 06:53

Gosh what a lot you have had to deal with. Do you have a good social worker? Ours has been a godsend.

BishopBrennansArse · 08/06/2016 10:08

Yep, we have 3 with autism. Between them they also have DCD, SPD, ADHD, severe hyper mobility, BOR syndrome, hearing impairment, CFS.

So, multiple complex needs. Two don't sleep properly.

So DH is also a carer, I am a disabled carer.

The slagging we get for being 'lazy spongers' is incredible, apparently we could easily work (well yes we could if we gave up on the idea of sleep altogether, ignored all the hospital appointments the kids have, sent them to school sick, stopped doing all the necessary paperwork and school reviews, didn't do the grocery shopping, didn't sort out meds, didn't repair the damage they do to the house...

bigbluebus · 08/06/2016 14:17

Very well articulated. I have a DD with a rare life-limiting genetic condition and a DS with HF ASD. I too gave up work to take on the role of carer which I have now been doing for 21 years! In later years I have also had to help care for my widowed DM who has now sadly passed away. Whenever the going gets tough or people say to me that they "don't know how I cope" I remember that there is always someone who has it tougher than me.

None of us choose this life but once it has been dealt to us we get on with it as best we can for the sake of our loved ones.

kazlau · 08/06/2016 16:44

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. Flowers

Owlytellsmesecrets · 09/06/2016 03:24

Full time carer here too! It is exhausting .... Life revolving around hospitals, appointments and equipment!

Janetizzy30 · 09/06/2016 11:14

Disabled full time carer here too it is exhausting to care for even a small disability and if I didn't have my dh don't know what I would do x

Kateg13 · 10/06/2016 21:36

Wow Steph, I can't believe what life has thrown at you, your storey is heartbreaking and inspiring. Two weeks ago my life changed as my lovely mum was diagnosed with brain tumours, at seven months pregnant with a toddler already my life has changed from wife / mother / friend/ daughter to mother and carer. It's working out a way through even when it's impossible. Im so sorry for the loss of your husband i can't even imagine what you've gone through. Your storey has made me realise I can cope with things it's just accepting its a different life from 'the plan'. Thinking of you, hope you manage to find as much me time and enjoyment from life as you can. X

M0903 · 26/06/2023 18:14

Hello, I am not sure if anyone on this thread is still active but I have just received a diagnosis for my baby (I am 26 weeks pregnant) of Costello Syndrome. We have been offered a termination as an option and I am a complete mess. I am terrified of making the wrong decision but cannot bear the thought of my daughter suffering. Any advice you could offer on this condition, I would greatly appreciate

boboshmobo · 26/06/2023 20:47

@M0903 sorry to hear that , have you read the thread ?
It's a very very hard life that I wouldn't choose if I knew but it's such a personal decision .

M0903 · 26/06/2023 21:35

@boboshmobo thank you for responding so quickly. Did you write the original post? Yes I have read the thread and can see it is very hard for people. I suppose I am asking if people knew like I did if they would take a decision to terminate. It is such a loaded and sensitive subject. I feel completely heartbroken either way. I don't want my little girl to have a hard life and also have to think about my other child who is 3 and how I would cope. It just feels so intolerable

boboshmobo · 27/06/2023 08:08

No I didn't and my son is not medically unwell but I'll be honest and I wouldn't have chosen this life . I know it's hard to hear but my older dd has been so affected by our situation she had a myriad of mental health problems and my son will never live independently. I love him very much but life will never be the same again.

M0903 · 28/06/2023 20:48

@boboshmobo sorry I may have missed your post in the thread. Are you a carer to one of your children? Do they have a physical or mental disability? If you would rather talk privately I would be interested to learn more about your experience

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