Week Thirty-Seven

Mammy in the front garden of her very first home…

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.

***

Chapter 20

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.

Week Thirty-Three

Mammy, the dancing Queen and music lover

A week later, back from Ireland, I learned that the ward dentist had referred Mum to the Maxillofacial Unit at the West Hospital. I asked Gold Acre to inform me of the date, so that I can go and hear for myself what the doctors have to say.

I finally took Monica out for her birthday treat, then Monica came with me to see Mum. We decided to hoist her out of her bucket chair with a view to a stroll in the sunshine. I was horrified at how unstable Mum seemed to have become. There is no way that she can get out of that chair alone. It took time and a large dollop of encouragement to keep her standing without wobbling. We all but dragged her to the garden, but once outdoors she was off like one of those squash balls in slow motion, bouncing into all the walls. Apart from toppling the bird table, she had fun and enjoyed the sunshine and the breeze. I do need to ask why Mum spends so much time in that chair.

***

The following day I phoned Gold Acre and found the ward manager very calming and sympathetic. He asked me if I had any concerns to which I replied that I would welcome an opportunity to discuss Mum’s ‘care-plan’, as I have no idea what medication she is on currently and ‘I do have some issues’. I imagine he was groaning inwardly, but he remained very encouraging. He said that Mum’s consultant was ‘on holiday’, but that on his return I would be invited to the weekly review. I did express some concerns about her mouth, hygiene and her ‘triangular bucket’ chair.

***

This Friday, three weeks after the ward dentist saw Mum, I have been given an appointment date for the Maxillofacial Unit – 20th May. That is satisfyingly sooner than I had anticipated.

Before a trip to London, I finally contacted Mum’s friend Wendy. When I next went to Mum’s I spotted a bag of large chocolate buttons and said, “has Wendy been to see you?” and she said “Yes, yes she did.” It is unusual now for Mum to actually say a complete sentence, even one as short as that, so Wendy must have made an impression.

After getting Mum suitably animated with Gene Vincent and Kenny Rogers, I took her hands and, with a “shall we dance, Madam?” managed to coax her out of the bucket chair. Dancing was a bit strange – more like a clumsy smooch around, but Mum seemed happy to be up. She does bump into everything when left to her own devices, so maybe that is why they prefer to keep her sitting – for health and safety reasons.

Julia has decided that she does not want to see her sister again. She wants to ‘remember the old Av’. She admitted that her angle might seem selfish and I tried to give her a different perspective. But…

***

I think that some of my concerns were heard, because on Friday the ‘bucket-chair’ was gone and an ordinary chair in its place. Of course that meant that Mum was wandering around the corridors, getting lost in unfamiliar territory and bumping into everything.

I must write down some questions for tomorrow’s meeting with the new consultant. Care Plan? Medications? Section? Daily routine/hygiene? Meals? Behaviour? Exercise and Stimulation…?

***

So I got my list of questions out… Medication was a straightforward one. She’s still on the epilepsy control (Tegretol), the anti-depressant (Trazodone) and the anti-psychotic (Haloperidol). The latter he has already reduced from 3mg to 1mg daily and intends to drop that one altogether. If the hallucinations and distress come back, he plans to try ordinary anti-dementia type drugs like the Aricept. He said it all so matter-of-fact. I was sort of anticipating that this would happen with the Haloperidol, but I didn’t expect the hospital to do it after spending all this time finding drugs to stabilise her. But I didn’t say any of that, because I don’t think of the right words to go with my thoughts and feelings at the same time. I don’t want her to deteriorate again now she’s finally content (-ish).

He said that her progress is reviewed daily by the staff nurse and three times a week more officially. He does the rounds weekly, but has been away for a month. He mentioned the growth in her mouth and that he had noticed some cellulite on her leg, for which he’d just started her on antibiotics. He asked if Mum had ever had a firm diagnosis and, as I tried to explain, he too said how it was ‘all just academic’. We discussed Mum’s deterioration since 1997 and whether any of us offspring would like to be tested to know if we have that specific gene to cause early onset Alzheimer’s…? He thinks that Mum has both Alzheimer’s and a type of vascular dementia, because she presents such big mood swings and the psychosis. He said that Mum has been taken off the ‘Section’ so I asked whether I could now take her out?

“You could always have taken her out. You only needed the doctor’s permission!” was his astonishing reply.

I don’t know where I could take her now though. It is a scary prospect and I couldn’t do it alone. She is a bit more mobile again now that she is not perched in the ‘bucket’ for hours.

He also said that Gold Acre is ‘a hospital unit for complex needs and behaviour issues’ and that their job is to stabilise patients ready to send them into more permanent home settings. This I did know, but I had put it to the back of my mind, since the last assessment was that Mum would continue to ‘need at least the same level of care as at St Peter’s Unit’. He said that he would expect Mum to be able to move on in a few months and asked me if I had somewhere in mind? I do not have a clue. How could I know? She isn’t ready for an ordinary nursing home, even one dementia registered. He reassured me that a Social Worker will get involved again when the hospital decide to send her off and that they would all help to place her appropriately.

I tried to ask about daily routines, stimulation and care-plan, but that clearly was not his expertise so he referred me to Mum’s key worker who is…we don’t know? I must find out and run the rest by them. The consultant has given me plenty to think about.

***

Mum is becoming tearful and unstable again – possibly the result of a reduction in medication? Today I met her shuffling the corridor with that look of confusion and rage that she had before.

The nurse said “Look, here’s your daughter, come to see you!”

Mum glowered and said “Who are you?”

She looked angry and started to scream, mimicking Betty (another resident). I took her back to her room away from the noise and closed the door. I asked if I could have a hug and she said that she didn’t have any.

“No hugs for me?” I questioned

“Well I suppose…”

I forced her arms around me and cooed and encouraged. She started to cry and said,

“I want to die…Well, you can’t… I want to kill myself…No, you can’t…”

I just held her, prayed and told her how loved she was. Then I creamed her face, so that she would smell like Mammy again and we both sang and laughed, whilst I fed her lunch. Someone had tied her hair back in double ponytails and she looked very pretty.

When I made to leave, she playfully said, “No, don’t go!” We were both smiling and bouncy when I left.

***

I was nervous about them taking her off the Haloperidol, but this time she seemed fine. She had had her nails painted and was wandering the corridors, singing to herself. She was playful with her gabbling and entertaining the ‘babbies’. The hallucinations are much stronger again, but seem positive. She is often questioning the babbies and telling them off. “I’ll kill you!” was a more extreme reaction, but the babbies are never far away. She was making creepy sounds and faces to a ‘rhyme’ and then building it up to a scary finale to make them jump. She was clearly enjoying herself. She seems to understands the majority of what I say, but unfortunately I no longer understand most of her replies. It doesn’t trouble me, though I would love to know what she is trying to say.

Before leaving I went to check about Wednesday’s Maxillofacial appointment. We discussed how to transport Mum and concluded that a wheelchair and taxi would be easiest all round and I will meet them there.