Kyla Murphy Parent Carer and Trustee
Hello, I’m Kyla Murphy, one of the newest volunteer Trustees for CSSL. I came to the role during the Covid-19 pandemic, as a result of my own Carer’s Assessment.
I’m blessed to be a Mummy to two wonderful toddlers who came to me and my husband through adoption. When we were being assessed for our second addition, we were told that the “extra” we were doing for our first child was classed as “additional needs”. All of a sudden we had not only a premature new born, but our little boy we thought we were starting to know everything about, opened up a whole new world of what’s, when’s, where’s and who’s in assessments and professionals. We didn’t realise that what we had become was Parent Carers.
We had no idea where to turn for support or advice, until a learning and disability nurse told us to register with our local Carer’s organisation and we were introduced to CSSL via a Carer’s Assessment.
I’d go so far as to say I was on the verge of Compassion Fatigue, but I recognised the signs and was looking for help, but I didn’t really know how to help myself. To add to this, over the past few years, my own chronic conditions had also escalated and so I’m not only a Carer, but also cared for. I’ve had experience on both sides of the fence; by this point I’d completely lost my sense of ME.
From the moment I gave my details, I felt I’d found my people. Even the assessment itself helped me to identify what it was I needed. I’ve put these into my top three pieces of advice to new Carers:
1. Find your people; share the knowledge and the load
Being a Carer can be incredibly lonely and isolating, especially over the past two years. I think lockdown has given people a sense of some of how that can be for Carers much of the time. It also means it isn’t as easy to maintain friendships, stay in touch with family and even pass by acquaintances in the street.
Other Carers and those with awareness of what it entails are excellent sounding boards. You are not alone and you are finding it difficult because it is difficult. You hold a wealth of knowledge and experience about where to find support, the right medical professionals, aids, which cafes are the most wheelchair or buggy friendly.
Carer Connect is a great place to reach out to others in similar caring roles to you, categories of “coffee morning” and advice are easy to find and it’s a secure and moderated platform on which to unload your thoughts without judgment. If there’s a group not there that you think should be, it can easily be set up. You’d be surprised how reassuring it is for someone to breathe a sigh of relief reading your experience and say “I’m there too.”
CSSL also has various face to face groups, a wealth of advice sources and links with professionals. Your initial Carer’s assessments and keep in touch calls can help to identify what you want to tap into.
2. You can’t pour from an empty cup
I’ve seen this as a Carer and cared for. The modern world is so built upon measurable productivity that we forget that resting is an important part of that. We give so much of ourselves to just making it through each day, sometimes each hour, that it’s hard to find time to recharge.
Often caring means waking several times a night, then there’s getting to sleep in the first place. Asking for help is so hard. It can feel like you’re failing.
Your loved one relies on you so much. What happens when you’re doing so much you end up needing care yourself? I had a reality check with this recently, when I ended up in an ambulance on the way to hospital because I physically collapsed. You need to look after yourself to be in the best position to care for your loved one.
Carer Support can help you manage some of this by their sitting service, that may be for an evening with friends, or to attend your own medical appointments, helping you access support from social services, short breaks and other respite activities.
Our “Give Them A Break” fundraising is based on the idea of just that – giving Carers a Break with something even as simple as fluffy towels for after a long soak in the bath, craft materials, an overnight stay in a hotel with uninterrupted sleep.
And if you do find yourself in an emergency situation for yourself, they can activate the “Red Card” that will ensure a backup plan is in place to help your loved one if, for example, you find yourself stuck in hospital unexpectedly.
3. Remember who you are
My own Carer’s Assessment helped me to recognise how important this is and it is how I came to being a Volunteer Trustee.
I became a Carer without really knowing it. I gave up by career as a Solicitor when we realised that our boys’ needs at that time couldn’t be met in a nursery or other childcare setting and realistically they couldn’t be left with someone else for most of the week. The client standards couldn’t be met in a three day week either. As much as I loved my job, I loved my children more. The Law will always be there, my boys’ childhood will not. Their needs will always come before my own.
So I became “just a Mummy”, who also happened to be nurse, physiotherapist, occupational therapist, speech therapist, teacher, singer, chef, chauffeur, P.A., cleaner, artist, builder, electrician (oh, the batteries in toys!), health and safety officer, book reader, knee kisser and overall safe base and secure attachment that they so need.
This is one of the first times I’ve written substantially in full sentences, other than for their Education and Health Care Plans, since our adoption assessment!
I needed to be Kyla again and being a Trustee allows me a few hours a month to really use my brain again and have constructive adult conversation. I also get that sense of worth and feeling like I’m “productive” and giving something back to society rather than being “just a Mummy”; a position that has lost it’s value over the decades and when you’re so much more especially as an additional needs Parent Carer, does not do justice to the work you do in a day.
It is so important to your overall wellbeing to find that time, even if it is a few hours a month, to be you. Not husband, wife, daughter, son, Mum, Dad, brother, sister. Take back your name. What were you “before”? An Artist or Crafter? A team sport player? A pub quiz aficionado? A traveller? A hiker or cycler? Oh the possibilities!