The recent deterioration in my condition has, in combination with changes in the provision of the care package, resulted in a degree of misery for both Polly and myself. Trying to manage everything has become too much. For example, with me needing help feeding myself, tea takes longer but the boys still need to be showered and in bed at a decent time on a school night. We needed some extra help around bedtime to get things ready before the carers arrived to tuck me in and read me my bedtime story. It took significant negotiation to arrange for one of the carers to come half an hour early. Or, that as my medication wears off at around 3am I wake up in pain. A change of medication might help but equally a different kind of air mattress might be the solution. We need to liaise with the doctor, the occupational therapist and the PCT for funding a change of bed. Disturbed nights are taking their toll on Polly, so we need some kind of occasional night care. Carers don't work past 10 o'clock so night nurses are needed, but who pays for them? And so it goes on and on. One change leading to another and more and more agencies needing to be juggled. One agency can't work independently of the others but it seems almost impossible to get them to communicate with each other.
On Thursday morning the great and the good gathered in our living room. My GP, Dr Toosy was there, as was Tina the District Nurse who is also my care manager, Karen from the PCT continuing care team came with her cheque book, Valeria from social services was there to represent Polly's interests as the primary carer and Valerie, an Occupational Therapist completed the assemblage. Polly had been up until 1.30am typing up a statement and list of objectives.
The opening statement read -
As a family Stephen and I have always tried to maintain our independence, and addressed any issues around Stephen's condition as necessary. Until this time we have, through good relationships with all of the professionals involved, had a mostly positive experience regarding Stephen's care needs. During Stephen’s time in the social care sector we had a fairly consistent approach to Stephen's care. We felt independent and empowered by the decisions we made and more importantly we were able to live a “normal” family life.
Under the current medical model we have found ourselves left floundering, with Stephen's condition regarded as needing nursing care we are working within a system which has no ability to see Stephen's needs as anything other than medical.
At a time when we as a family have to come to terms with dramatic changes in Stephen’s condition, we are also having to fight for any help, or indeed a voice. We feel let down and manipulated by this change, and feel a total inability to access a changing level of care, which addresses both Stephen’s needs, and those of our family.
I personally feel I have been cast in a role of carer, which negates any other, such as wife, or mother, or provider that is something, that is for both of us quite unacceptable.
I have also felt that I have had to question my own ability to care for someone I love, and have been brought at times over the past months to feel I could no longer cope. However,when I have voiced these concerns, I have felt that no real help has been offered or worse coerced into continuing by being offered solutions such as residential care. Which is something we do not want to consider.
When the quality of the memory’s you build for your children is defined within funding budgets, when your life is dictated by decisions made by PCTs, when even your most basic of human needs has to be met by someone, you find yourself in a position where you need to ask others for help…
That is why we asked you all here today, so that together we can find a creative ways of addressing Stephens care needs and redressing the balance of Stephen's changing condition as being part of, but not all of who we are.
The statement focused everyone's attention and the list of objectives Polly had prepared kept us to an agenda. Firstly we dealt with some of the night time issues. Dr Toosy agreed to review my medication regime and the OT agreed to look into a new bed and air mattress which the PCT agreed to fund. Next we looked at meal times. Extra help has been arranged which will increase the range of food I can eat, especially at breakfast, and provide assistance for me to prepare meals for myself and the boys when Polly is working. Funding is also being organised for the Neater Arm device (see the I, Robot post) which will vastly increase my ability to feed myself. Some night time care has been organised to give Polly some respite and also to allow us some kind of evening social life (babysitters not withstanding). And the possibility of respite care and family respite holidays is being looked in to.
More was achieved at this meeting than had been achieved by countless hours of phone calls, letters, emails and meeting with individuals over the last year. I can't thank those who came enough. It was truly gratifying seeing all these disparate agencies working smoothly together, efficiently getting things done. It is also reassuring to find that they really do want to help. Having the OT who has to organise something in the same room as the doctor who says it is necessary and the person who has the authority to arrange the funding for it is amazing, and surely a model for how things should be done. Special thanks to Tina for coordinating everyone.
Obviously we have yet to see how the results of the meeting pan out. I'm sure there will be some tweaking that needs doing before it all runs smoothly but it feels as though some real progress has been made.
After the meeting I felt quite mentally and emotionally drained. It is difficult being at the centre of such intense attention, even if it is for my own benefit. I know Polly felt likewise. We we were both wound up for battle and then found everyone being terribly nice and agreeable. It was disconcerting. I think we were a little hysterical when we began to wonder how far we could have pushed things.
“I want all the care staff to dress in lavender and sing Abba songs,” I suggested. “I want a pig and a stick with which to poke it,” added Polly. We had lunch to calm down.
I will, of course, keep you informed as to how it all works out.