Deep Care

Earlier this week I read an excellent blog post from Kara Chrome, The Chair of Anthropolyatrics where she discussed the need for the role of an adult paediatrician, a conversation that has been rumbling around the world of families like us for sometime.
They would do well to look at the model working for our lovely daughter.

It is no secret that when she came back from residential school she spent a year of her life dying. I slept on her floor and the walls closed in around us. We were rescued from this desperate place by palliative care at Great Ormond Street under the guise of consultant Fin. She came to our house, she saw our distress, she arranged a psychologist for me and night care for Iona. We found a solution to allow Iona to go back to education and slowly life became almost normal. I can still remember my overwhelming distress when our lovely daughter a few years later had to move into ‘adult services’. The team that had provided us with warmth, understanding and deep care would be gone and once more we would be floating around in an unsupported alien world.

But the transition was managed. Fin came with me and Iona on our first appointment to the proposed adult neurologist. When I left in tears having encountered someone once again who knew best and didn’t listen, she found me the kind of neurologist I could work with, someone who listened, who cared and who put quality of life way over quantity of seizures. That next step was replacing herself.

She broke a new pathway to the adult hospice service and took me to meet two different palliative care consultants. I chose the one who made me laugh the most. He resides at the Marie Curie hospice in Hampstead. I go with Iona every 3 months for a visit, we chat, we laugh, sometimes I almost cry as he checks in with both of us. We develop new understandings and I sometimes learn new procedures. We talk about fears, exhaustions, holidays, bloods, bowels, sleep, drugs, skin, life and he always asks if there is anything else they can do to help. As much as I have come to hate hospitals I have come to love hospices.

Yesterday I sent a last minute email about a holiday I will take. A scary time.

This is what I got back this morning, ‘I have popped Iona’s name into a bed slot for the period that you will be away and I will let the team know of the process so please rest assure we will be here as a backup – I hope all is calm during that time –  and enjoy your well-deserved break :)’
This was my reply, Thank you so much. Your help just makes it all possible

It seems to me that when a person with learning disabilities becomes an adult they need a consultant who listens, who cares, who has access to specialists when they are needed, who has time and who takes time to find out who you are and what will help. There is little room for this in big, monolithic hospitals, and GP’s who need the support of paediatricians in childhood are unlikely to manage an overnight change as the young person celebrates their eighteenth birthday. People with special needs are dying younger than they should, their health care is not as it should be. It is time to stop talking, start applying common sense, and truly value the lives of people who have so much to give.

Take Good Care

It has taken  a long time to identify myself as a carer, one of the almost 7 million in the UK. Increasingly, I realise that the demands of looking out for someone 24 hours a day, however much I love her, places me firmly in that camp. The additional needs which can range from providing a literal shoulder to lean on, to recruiting carers, to administering life saving medication, to witnessing horrific seizures has eventually convinced me that this is an out of the ordinary parenting role.

I was shocked recently when asked that simple question, Whose mask would you put on first if a plane was going down, yours or your daughters, to answer without hesitation my daughters. It is a cliche but a telling cliche.

It becomes a habit to think of others before ourselves. Not in some kind of angelic, saintly way but as ritualised behaviour often accompanied by, said with a hint of shame, resentment. It can be annoying, irritating and frustrating to be seen as somehow better than others, more rounded, more able, when actually what we often feel is overwhelmed by sadness and fear. The sadness that it has always been this way and always will be, and the fear that we may be unable to continue both emotionally and physically because the tank is empty.

It is an essential truth that carers need to look after ourselves but it is not something that always comes easily. Many carers have to be given permission to do this, convinced that essence of you is caring for others and time spent not doing this is indulgent, wasteful and frankly flaky.

Yesterday in a yoga class we were working towards an arm balancing pose, astavakrasana, when I ended up in a crumpled but smiling heap, not quite the desired effect and luckily no accompanying photo. The lovely, downtoearth yoga teacher explained that the pose was like dealing with a difficult person. You do not try to address all the difficulties at once, you take them small step by small step and eventually you may have a better relationship  with that person.

This is the same for carers. You cannot expect to make peace with the enormous and life shattering change that is being a carer in one step. You cannot learn to look after yourself overnight after years of neglect, but you begin to build small moments when you find yourself again. Mine are often found on the yoga mat, where do you find yours?