The web of care

And all over again I am sitting here wrapped in that familiar web of dread, fury, anxiety, despair and love. It feels like there is nothing left to do but write. To find a home for this most toxic mix of emotions.

Nothing in life prepares you for that wash of love when a child, your child is born. That desire to protect and nurture mixed with a feeling of total incompetence. The, ‘what do I do now’ question and the only answer, ‘your best’.

My daughter was born 30 years ago on the bathroom floor. A rushed and violent labour but there she was, a robust, pink baby girl. I adored her but wondered why she kept her eyes closed, but she did.

I wonder a lot about my daughter but I always love her. I find her funny and gentle and centred and beautiful. Mostly she is happy but nowadays she is also tired. She sleeps a lot, recovering from the bombardment of seizures that have been a constant throughout her life.

Her life is different from others and while it is good it is difficult. We are not living in a world geared to the needs of people with profound learning disabilities. Everything comes with a challenge from access to buildings to finding good support, to navigating bureaucracy, to finding somewhere to live.

So Iona lives with us. We have reconfigured our family home and she lives in her own flat. She is supported by a care team funded with a Personal Health Budget and managed by me with the help of an amazing team manager and a payroll company.

In order for this to work I take on full responsibility for her health. I liaise with the palliative care team and I am on call 24 hours a day, 7 days a week and since the hospice closed 52 weeks a year. I liken this role to being a fireman, constantly waiting for the next emergency, on high alert at all times. The difference is, this is my own home and my own daughter.

After the COVID lockdowns I hit a wall. I arrived in the doctor’s surgery, a wreck. Burnout had arrived at my doorstep and hyper vigilance was coursing through my veins.

It was agreed that we would receive additional funding for a nurse so I could take regular breaks. The added difficulty of finding a nurse fell to us but we found one.

For the last two years I have been able to have breaks. I have been able to plan days out, haircuts, day trips and even holidays. I looked forward to coming home from a break ready to resume my role of on call nurse to the daughter I love.

So why the rage, the fury, the despair? A new web has been spun. The promised funds have not arrived in my daughter’s account. The budget is dangerously low and the administration lines tangled.

I tell myself all will be ok, that we will get there but I also tell myself it is not fair. I should not be put through this kind of thing again.

Every family with a child with disabilities knows this scenario. I am not alone in finding the system that is supposed to help complicated, challenging and opaque.

I wish it was otherwise. I wish more had changed for the better in the last 30 years. I wish that I could raise my head further from this life of care but there will always be challenges, I will always feel incompetent but I will try to remind myself the only goal I can aim for, is to try and do my best.