Tag: care

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.

Moving forward

Yesterday I sat in the sun. I watched the rain. I saw the hailstones. I felt the warmth. In one day all the seasons. Just as the weather changes, we change too. We flip from good to bad, from the mundane to the extraordinary, to moving forward to standing still and sometimes we feel we go backwards.

This week I spent most of my time searching for a new support worker for my daughter. I placed ads, scanned CV’s, called candidates, spoke to agencies and set up interviews. I let the process into my head, then meditated on patience. The right person is out there, I just have to find them.

We are losing someone who has been wonderful, kind and creative, who has been a friend to my daughter and a friend to me. She has brought joy, kindness and care into her work and while she must move forward, her loss has moved me to a sadly familiar place.

Some types of loss are universal, there are patterns of mourning, there is a shared understanding. The loss of a good carer is less understood. They have been by your side witnessing the good times but also the bad times. They have worked in your home, they have seen the unseen, that which might not be visible to your friends, your neighbours and even your family. They have seen the beauty but also the torment of my daughter’s life. When times are bad they show up.

The debt we owe to good carers is enormous. As a family our lives would be unmanageable without them. My daughter’s life has been enriched in so many ways by the love, the laughs, the walks, the yoga, the stretches, the hugs, the dancing, the music, the conversations and the fun.

Good care goes to the heart of being human. I have just asked our other team leader why she does the job and she answered, because I love it.

Care is an under-rated profession but in a world increasingly dependent on technology, isn’t it one we should be investing in? And I don’t just mean with money but also with recognition. Most of us will need to be looked after one day. Wouldn’t you rather be looked after by someone you like and respect rather than a robot or perhaps, no-one at all.

It is impossible to replicate a good carer and we wouldn’t want to. They each bring their own skills and their gifts, their love and care, they bring an openness to learn and my daughter, after all, is the best teacher.

So while I quietly mourn the loss of a beautiful team member I celebrate the fact we were lucky enough to know her and enjoy her company and support.

If you happen to know someone who might be able to fill that gap do let me know, so I too can move forward.