Yasmeen, mum of Shakeerah, shares her experience as a parent-carer for Carers Week 2019.
Published: 13/06/2019
Coming back from maternity leave after six months and working for an employer that has a flexible approach to staff member’s work/life balance, I thought I had found a happy balance between being a new mum and my job. I knew it would be challenging, but nothing prepared me for what was about to happen.
Just after her first birthday, Shakeerah was diagnosed with the biggest brain tumour the neuro surgeon had seen in a child of her age and whisked her off to be operated on immediately.
Later we found out she only had hours to live. The number of consultants that then became involved in her care and the intricacies of all her problems became quite clear very early on and we realised then, that she was not going to be a textbook baby.
I knew our lives would never be the same again.
Fast forward to present and I sit on my bed typing, whilst Shakeerah sleeps next door with a peadiatric nurse looking after her.
She has a tracheostomy and uses a ventilator overnight. She is fed through a little plastic tube in her tummy and bears scars around her head and tummy from numerous operations (45 and counting) she has had to date.
And she is the fiercest little creature I know, ruling our household with her small yet powerful iron fist. Her medical issues are complex, but against all odds she has persevered and is meeting most of her milestones like a typical toddler. She is a survivor.
Whereas I am blessed with having a supportive partner and help by way of homecare nurses, the fact remains that the lion’s share of caregiving falls onto my lap, thus making me Shakeerah’s primary caregiver.
I am so thankful I have an employer who is able to be flexible with regards to my working hours and colleagues who are very supportive of my cause. I have spoken to other mums who have had to give up work and lose not only their independence but their identity within society.
In my past, as a career woman, I did not particularly think about caregivers, and to be honest, I probably – mistakenly I must add – would have not thought it a particularly hard way of living.
Now having lived it, I could have never imagined how complicated being a caregiver is. In order to master it you need not only be good at a few things – you need to become a jack-of-all-trades.
Take, for example, the medical side of it. There is a lot of mundane stuff like setting up tube feeds, but parent-carers at home are increasingly carrying out complicated medical procedures, from administering total parenteral feeding to emergency tracheostomy changes to performing CPR to the highest level.
They read articles and books on their kids’ conditions and spend hours chatting to professionals and other parents. They try to get their heads around complex medical conditions to find anything that could help to make their children’s lives just a bit better.
They do endless hours of various therapies at home, from physio exercises to teaching their kids sign languages, to spending hours practicing taking smallest of bites of food and sips of water to teach their child to eat (or at least not being so afraid of having their mouths touched).
They are the experts in their kids’ conditions, their children’s nurses, the physios, the dieticians, the speech and language therapists, all rolled in one.
They have big calendars on the wall and white boards with numbers written on to make sure that they keep on top of all the appointments with different medical teams, therapy sessions, and deliveries from medical suppliers.
They negotiate with nursing agencies and respite providers and chase up any loose ends.
They are excellent at packing up for hospital appointments, and manage to travel to hospitals with a carful of medical equipment keeping their special little people alive, occasionally pulling over to carry out life-maintaining medical procedures.
They are their children’s personal assistants, managers, porters, and ambulance crew members all rolled in one.
They spend hours fighting to get the right services in place for their kids, whether it is enough nursing hours, safe homes, respite, or even access to education.
They research what their rights are and burn the midnight oil reading complicated legal texts. They spend hours writing emails, putting in complaints, even attending tribunals, to enforce those rights.
They attend public meetings, meet with politicians, campaign, and start petitions. They are their child’s advocates, lawyers, campaigners, and lobbyists all rolled into one.
So you see, being a caregiver is so much more than feeding and changing.
It’s challenging and hard, but it is also rewarding, and at its best filled with moments of love and joy. The hours are awful and the pay, in monetary terms, is bad, but few of us adore our workplace bosses as much as those looking after loved ones.
Above all it is a labour of love, and that is what motivates me to do my job as a parent-carer the best I can.
Residential short breaks at The Children’s Trust offer flexible, nurse-led care for children and young people between the ages of 0-18. Set in 24-acres of beautiful woodland at our national specialist centre in Tadworth, Surrey, we offer overnight stays in comfortable, fully-accessible bedrooms, available seven days a week.
This section looks at the way acquired brain injury can affect the rest of the family.
