I still have done little about finding a new home for Mum and am beginning to panic. I phoned the Social Worker to see if he could help steer me in the right direction before the MDM (Multi-Disciplinary Meeting), but his advice is for me to do nothing. He said that Gold Acre had been out of order to make such a demand before a decision has been made. Apparently we will all discuss the Continuing Care Assessment and the Social Worker will have also done his own assessment before the review. He seems to be very cross at the way they are going about this. I am relieved not to be having to find Mum a home before the end of next month, but I hope it doesn’t jeopardize Mum’s chances of the best care.
It’s now August bank-holiday and Mum still has yellow bruising around her face. The weather is still fine enough for us to stroll in the garden area and, despite finding Mum rendered immobile in her room when I visit – either in the bucket chair or with her feet up on the bed – I always manage to get her up. On Saturday I got her out of a soggy, smelly chair and took her into the bathroom to change her. She was quite lucid and in much better form when she was clean and up and about.
The boys are now back at school for the start of Conor’s year 8 and final GCSE year for Joshua. I continue decorating and Simon and I are busy setting up our new business. Who knows what other exciting challenges we have in store…
The check-up at the West Hospital was not good. The doctor began by explaining that it had been a Kerotocyst, formed from the cells that make the enamel for teeth. Good that it is not a cancerous cyst, but it does mean that it could grow back again and that we will need to keep an eye on it. When he checked inside her mouth his disgusted expression told the story before his words did. Apparently the wound was completely infected and full of puss. He did say that it is difficult to keep such a wound clean, but I don’t think he expected it to be so bad. He requested a sharp pink needle, unsure as to whether Mum would allow him to proceed, but did so armed with a bowl to catch the fluid. It was satisfyingly gross as he injected a needle full of Corsodyl to force out an equal amount of puss and gunge into the waiting receptacle. Poor Mum, the unpleasant sensation must have tasted foul. The doctor could now only prescribe a dose of antibiotics and reschedule the checkup for next Thursday. Waiting for the prescription, Mum was saying again how she wants to kill herself and then arguing that she shouldn’t. I do wonder how old that notion of wanting to die really is. Or is it a new thought? Is she capable of new thought? There is so little that she says intelligibly – “Where are the babbies?” “Who are you?” “I want to kill myself.” – these seem to be all I hear nowadays, except “Yes/No” answers. It is terribly sad, but fascinating nevertheless.
It is difficult trying to invent enthusiasm when Mum does not seem to care whether I’m there or not. She does sometimes respond when I’m bubbly and bouncy, but I don’t always feel that way. It seems that they have decided to take Mum off the Tegretol and put her on the Cepra to control the Cortical Mioclonus. It has certainly stopped the jerks already. I find her very ‘low’ though, but that may be just a reflection of my own mood? On Sunday her head was so stooped that as she shuffled around her room she would make first contact with the top of her head at each wall or barrier. I found myself following her around with my hand in front of her to cushion her head, just like you do when toddlers’ heads come smack level with all the tables and chair arms. She has started asking me who I am again too. Occasionally she finds my answer reassuring, but just as often she cannot believe me and is distressed by it. I think she likes the hugs, kisses and human contact, but there’s not much else I can do.
Check-up number two went much better. The infection was gone and the hole was beginning to heal. The doctor let me look at the extensive, gaping hole in her mouth. He requested some ‘BIP’, which looked like a fabric soaked in pungent, yellow ‘germalene’-type stuff. The purpose was to block food going into the hole and stop reinfection. It also allows the wound to heal inside out so that it can heal completely clean. Courageously he made to poke a strip of this smelly antiseptic ‘BIP’, with tweezers, into the hole, but she wouldn’t let him. She was outraged. She left the clinic stressed and man-handled, but soon forgot and drove away fairly happily in the taxi.
Mum’s review – or MDM – is tomorrow. I’m anxious as this is where I think Gold Acre will say that Mum has to leave them and then I expect the NHS and the Council to be in dispute about the level of Mum’s needs, suitable alternative care and, of course, funding.
I read again through the ‘NHS Continuing Healthcare Needs Checklist’ that Gold Acre had completed in May this year and have highlighted the areas that I consider inaccurate. I took it with me to the meeting where five of us were present: – the Social Worker, Mum’s key nurse, two other specialist nurses and myself.
Firstly one of the other nurses said that Avril was now ready for discharge and asked me whether I had been to look at homes for her. I admitted that I hadn’t as I don’t know what I’m looking for. They told me that the meeting was part of the process to decide on the question of needs and funding. The decision would then go to a Panel, who would decide the final outcome. I am still not sure what difference it will make to Mum or myself, who funds the continuing care, but understand this to be a necessary stage in the proceedings. What is important to us is the assessment they make of her needs, level of care and therefore what type of home she needs. We discussed each of the 11 categories – from behaviour, communication, cognition…through to medication, continence and ASC (Altered States of Consciousness) – with each interest group presenting slightly different perspectives. The result was that she scored one ‘severe need’, two ‘high need’, two ‘moderate need’, four ‘low need’ and two ‘no need’. The nurse had written:
“Mrs Haynes’ challenging behaviour has now settled in to a manageable, predictable pattern and no longer requires a hospital. There is a high level of cognitive impairment and all activities of daily living require meeting. Sometimes there are minimal bursts of agitation on nursing intervention. Mrs Haynes’ needs could now be adequately met in a community setting with appropriate registration. Requires a 117 aftercare.”
‘Section 117 aftercare’ is the kind of care she will need, having come off a ‘Section 3’, apparently.
She admitted that Mum’s behaviour would be much worse if not carefully managed by isolating her away from any noise. She also stressed that Mum cannot make any needs known, nor can she do anything at all for herself. I was surprised to learn that Mum has to take ‘Senna’ on a daily basis too, as she no longer knows how to push…
So, they are requesting full continuing NHS care funding, but what do I look for? The Social Worker said that he was struggling to think of anywhere in Nottinghamshire where that level of care could be replicated. The nurses were all equally scratching their heads to think of a place with sufficient registration, but where the environment would not be too harsh… Eventually the Social Worker said that he thought it was very wrong of them to have expected me – just a family member – to be able to find a suitable home for Mum, when they, with all their knowledge and experience, could not think of one suitable place between them. Good point.
Still, I do have to look. They gave me a directory of Nottinghamshire homes and discussed the benefits of different registrations, but still they were struggling to name a plausible place. They came up with two suggestions – ‘Kirk Way’ in Cotgrave and ‘Sunset Copse’ in Lowdham. They also suggested that I look at the ‘CQC link’ on the internet to see what the inspectors think of these homes. I will have a browse over the weekend and speak to the Social Worker when he’s back at work on Monday. I don’t really feel I can do this on my own.