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-Four

Mammy having fun in the barn parties with Mon, and the family visiting the island…

It’s Tuesday and I got a message from the boss at Gold Acre, saying not to worry – although you do – but would I please call her. She said she was completing a check-list for Mum, ‘for future care’ needs, of which I will get a copy. She reiterated what the consultant had said – that she has settled well and that when she does become agitated it is predictable – e.g.: noise issues increase her agitation. She was informing me, she said, because Gold Acre is ‘a challenging behaviour unit’ and Mum apparently does not qualify as challenging. I mentioned my anxiety about taking Mum off the Haloperidol and she agreed. She said that they had taken her off and within 24 hours had noticed such a change that they had put her straight back on it.

She said that Mum is one of those who can join in with activities and does. They have activities two mornings a week apparently – I must always come on the wrong mornings.


I arrived a little early at the West Hospital, realising that I was nervous for my little Mammy venturing out into the unknown today. I got myself a coffee and observed, feeling quite transparent myself and somewhat spaced out. I spotted a big taxi with a Mammy in it and a carer, who used to work at West Hospital, began pushing the wheelchair. Mum had a face like drugged thunder. He said that she had been ‘difficult’ and “quite vocal this morning”, but I learned later that she had been ‘aggressive’ and had been given a shot of Lorazepam to make her more compliant.

In the Maxillofacial Unit I was working very hard to cheer Mum up and by the time the nurse came she was smiling sweetly. They sent us to their x ray department with a doubt in all our minds as to whether they would be able to do it, but the team were so friendly and good humoured – it was a delight to be there. They were able to do it with Mum sitting, so I fled. I didn’t want to be around those rays myself. They took her back in for a second x-ray, then we went back to see the doctor.

He was from Ghana and spoke almost exclusively to the chap that had brought Mum from Gold Acre, rather than to Mum or me. He said that the ‘growth’ was a cyst and that he would want to completely remove it, under general anaesthetic, as soon as possible. He used the x-ray to show how the cyst had pushed back the bones and parted the front teeth. It is incredible how a growth could have the force to move the teeth so much in such a short time span, especially when you consider how long kids have to wear a brace to straighten crooked teeth. He went on to say that, because Mum was not in a position to give her own consent, he would need the approval of one other doctor before he could go ahead. I asked whether the person with ‘welfare power of attorney’ could make that decision, but apparently not. He said that if two doctors made a decision that was contested by the person with welfare power of attorney, the latter would not win. It is not worth the paper it is written on in court, he says. I was shocked and fascinated. Not that I can imagine wanting to take a doctor to court. I am sure that medical predisposition is to preserve life, but I can imagine issues about the quality of a person’s life versus medical intervention arising…

Chapter 19

I took the boys to see Mum on Wednesday, as they had not seen her since Christmas. She was wet and smelly when I got her out of the reinstated bucket chair. The boys were ‘bored’, but…that’s life. We dropped in on Monica on the way home too – the boys were certainly not bored there.


Mum’s cousin Mike and his wife, Val came with their daughter, the other Dawn. We had lunch, then they followed me in their car to Gold Acre. Mum was in good form again, a bit grumpy initially, but we soon had her laughing. We sat outside and baked in the sun together, enjoying one another’s company.

I received a copy of that ‘NHS Continuing Healthcare Needs Checklist’ yesterday. I was surprised by some of the assessments that they have made. For example, they have three categories of need – “A – meets the described need. B- borderline. C- clearly does not meet the described need”. One category of need reads, “Continence care is problematic and requires timely intervention.” they scored that ‘C’ – no need. But she wears pads all the time and is often wet even with them. The other contentious one for me reads, “Mood disturbances or anxiety symptoms or periods of distress that have a severe impact on the individual’s health and/or well being.” They gave that one a ‘C’ too. We all know that Mum certainly has huge periods of distress. Maybe they think they have her all under control now? I don’t. She got ‘C’s (no needs) for ‘mobility’, ‘nutrition’, ‘skin integrity’, ‘breathing’ and ‘Altered States of Consciousness’. Mobility and the latter I would also question. She only got ‘A’s for two categories of need – Cognition and Communication, the latter which reads, “Unable to reliably communicate their needs at any time and in any way, even when all practical steps to do so have been taken.” That made me feel very tearful.

The person sending the checklist did write that “when we get involved with a community nurse assessor and social worker we will meet with yourself and go through a more in-depth checklist.” So it’s not all set in stone yet. I just worry that they are anxious to pass her on before she is ready.


Last visit to Mum was very interesting. She was in her room after lunch, although a care-worker rushed in to assure me that she had ‘only just come back to her room…she’s not in the bucket…’ Anyway, I found Mum there chatting and crying happy tears with another resident. A nurse then came to remove the other chap and put Mum’s music on. Mum continued talking and I was struck by how much more alert she seemed to be. Several times she looked directly at me, making good eye contact and smiling. There were also more English words expressed and the hummed tunes were recognisable. She was entertaining ‘the babbies’ again with ‘Frere Jacques’, Jingle Bells and some with ‘make you jump’ endings. I realised that she has not looked like Avril for a long time – like ‘the lights are on, but there’s nobody home’. This time there was somebody home.

I passed a comment to a nurse, who said that Mum’s medication had been increased (the Carbomazapine) because she had been becoming more shaky. I think that might explain the improvement in Mum’s alertness too. That medication is to keep the epilepsy under control, but it is also used against bipolar disorders and schizophrenia.


The last couple of weeks finds Mum much the same, though I’m finding the visits more difficult myself. Most of the time she is talking to herself in a way which makes me completely redundant. She doesn’t even answer me with the same degree of clarity that she she does herself.

“Avril? Yes? Diddle dee da bee her? No, I don’t think so. Oh, I see…”

But with me, there is no such level of conversation. Some days she is more shaky, others more alert. She is still very emotional, but not as angry or depressed.

In my recent dreams Mum is constantly with me and I am aware that others do not think that she has any needs. I awake feeling even more protective of her than usual. I have been thinking about all the issues a lot – her past, present and future and how best to meet her needs. Also I have been reading the book that Mum’s cousin has written. In there I learned a little more about the Foster family (Mum’s mum) and the world into which she was born. War rations were still a severe feature until Mum was eight years old and then an explosion of experimentation, ‘Rock n’ Roll’ and the ‘sixties’ (into which Debbie and I were born).

Today, as I was getting ready to go to see Mum, the hospital phoned to say that she had fallen.

She seemed more dozy than usual when I arrived, but she livened up throughout the visit. They had boxed her into the chair by putting her feet up to prevent her falling again. She has a large swelling over her left eye and a big bruise down the side of the right cheek and on her right upper jaw. They said that no-one saw what happened, they just found her on the floor. I wonder whether she had one of her ‘fainting fits’ again, but they have not been mentioned. The doctors gave her a thorough check over apparently and are satisfied. I think she is going to have two real shiners over the next couple of days. We enjoyed one another more today and as we listened to Elvis she kept clapping and telling him how much she loves him.

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.

Week Twenty-Six

Mammy’s cheeky smile and my beautiful sister

On Tuesday she wouldn’t let me anywhere near her. She was saying, “Go away. No!” the moment she saw me. I couldn’t be bothered to argue, but I’m not giving up hope.


On Saturday she was pleasant again, a bit dopey, but relaxed. She must have asked me over thirty times, “Where’ve you been?” “What are you doing now?” “Where is it?”

For my own sanity I tried using identical responses, then tried varying my replies, but her questions remained the same. At least I got to hug her.

It’s the days when she fights that are the most difficult for me. I want to shake her out of it.


It’s Wednesday 17th September today. I’ve been trying to tie up some loose ends with regards to Mum’s affairs. I spoke to Broad Glade. who have emptied Mum’s room and have all her remaining belongings in storage. I was in school for the afternoon, so I drove by to collect the stuff on my way home. They asked kindly after Mum. I was surprised to see such a large sack full of her belongings still – I thought I had taken most of them the last time. It felt strangely like the end of another era – as if she had died and I was clearing her estate. I found myself in a bit of a trance, but glad to be getting on with inevitable tasks.

I came home for a cup of tea and to collect Mum’s clean clothes. Simon offered to look after the boys’ dinners, homework, showers etc. My head was throbbing – not the best frame of mind to go to see Mum, but it’s all I’ve got today.

I found her alone in the lounge listening to some country music. I should have left her there.

She seemed to be bothered by voices, hallucinations and questions and threw it all at me. If I could have taken it all away from her, I wouldn’t have minded, but she just became increasingly agitated.

“Where’ve you been?… No, it’s not…. You haven’t! Who are you?… You look like her, but you’re not! Go away.”

“I am Dawn and I won’t go away. I love you. And I’m staying here!” I challenged.

“You still here?… Go away! You’re not her!”

‘Lord give me strength.’ I screamed inside.

I told her that I wouldn’t go, that I’d come to see her and that I wanted her to stop acting like a mad old woman. Then she told me that I was dead. That they’d had my ‘thingy’ (funeral?) already. She didn’t seem to think it incongruous telling me that I was dead, so I don’t know why I argued, but I wanted to ‘snap her out of it’. I hated feeling so ineffectual and useless, unable to reach her or comfort her.

“Why are you still there?” she moaned.

“I’ll be back!” I said and went home.


I’m finding it tough being back at work. Two days a week are taking up more than half of my week in real time and much more in head-space. It will settle I’m sure, but I do seem to be running behind myself and catching myself coming in the opposite direction.

I still haven’t spoken to the Social Worker and have heard nothing from the consultant since the first review, over six weeks ago. I know it’s up to me to do the chasing.

Julia calls me from time to time to ask after Mum, but she won’t go again herself. Debbie is moving back to England this week, for good. Actually, not England, but a large cottage on mainland Orkney. I wonder how she’ll find it seeing Mum now? I hope Mum is having a good day when Debbie goes.

Mum had a good day on Sunday. Well, good from my perspective. I actually managed to get two and a half glasses of water and her medication down her. She said the coffee tasted ‘like poo’ and the nurse made some funny comment about NHS services in general… But she liked the water. She also let me accompany her to the loo, which felt like quite an honour after all her recent behaviour. She had a long wee, which must be a good sign of a certain hydration level, but it looked more like ‘cola’ in the bowl when I went to flush it. We talked a lot of nonsense about the boys, my job and the sunshine. Round we went with pleasantries, but then her body language changed and a deep frown set in. She looked so frightened and confirmed it:-

“I’m scared!” she confided.

I asked her what she was scared of, guessing the answer.

“You know what! Daddy.” She whispered, exasperated.

I didn’t know what to say for the best, but I hugged her tight and tried to reassure her that Daddy couldn’t physically hurt any of us any more. We went over this theme for some time and she tossed and turned and wavered in her understanding of the reality that I was presenting. She seemed to understand that Daddy had died and that she had his ashes in a brass case, but she still believed that he could and would hurt her. But having been married to this formidable, abusive and broken man for 32 years, it is understandable.

We prayed together and after some time she seemed visibly less anxious. It was long since time for me to be gone, but I clung on to the moments, feeling happy to be of some use this time.


The Social Worker came round to see me last Tuesday and made me more determined to speak up at the next review. The hospital have been observing Mum for over 8 weeks, watching her deteriorate – not eat or drink or take her medication – but they don’t seem to be doing anything proactive or even trying new drugs. Mammy seems to be becoming more and more obsessed by the hallucinations and monsters in her head and is angry and frightened and miserable – tormented really is the best word. They can’t send her to any other place in this state, but I want to know why they seem to be doing nothing and whether they do plan to do something.

I personally think that Mum is suffering from more than ordinary dementia, but I don’t know that. She appears psychotic or schizophrenic, but I know that these behaviours are also manifest in dementia. The nurses are very concerned for her and do not seem happy with the care plan themselves. We have to trust that the consultant does know more about dementia and available drugs than the rest of us, but I know more about Mum than they do. I feel that she is in too much distress and I feel responsible. I want to make it better.

Busy with all these things, as well as school, I also heard that an article I wrote over the Summer has been published in the October edition of the ‘Curate’s Diary’. It is the first thing I’ve ever had published, except school policies. Also, some bad news – Ofsted have announced they are coming next Tuesday for a one-day inspection. There is an ‘f’ in Ofsted! Obviously I have offered to be there to support my colleague. I then realised that I was expecting Debbie and family over that weekend and that Mum’s long-awaited review is the same day as the inspection.


Debbie came and went to see Mum, but didn’t get a better reception. She had gone with Olivia on Saturday and found Mum typically monstrous. Mum had scratched Debbie too. Despite my warnings, I think they were still shocked to see the way Mum has deteriorated these last two months.

On Monday I decided to do my job application before I went to school. As it is a temporary contract, I have to now apply formally for a permanent post. I don’t have time to think about whether I have the energy for all of this, but we need the money.

I also had to prepare for Mum’s review. Debbie and Monica are coming, so we are going in force.

On Tuesday it all went to plan – the Inspector came into our shared Year 1 class and as she left at 10:15, so did I. Apart from the buzz of nerves, there was a very positive and warm atmosphere throughout the school. I felt proud to be a part of it. We expect a good report.

Mum’s review was positive in that the consultant does have something that she wants to try. It is Haloperidol, a drug often used for schizophrenia. One of the difficulties at the moment is that Mum won’t take medication orally so that limits them to drugs that are available for intravenous injection. Hopefully, if this one calms the monsters in her head, then they might be able to get her eating and drinking again and she might consent to taking them orally. She will not consent to the injections, but part of having a ‘section’ means that they can force an injection. It isn’t really possible to force someone to swallow. It’s not ideal, but it is a move forward. So I am satisfied for now and will keep monitoring the situation. Monica and Debbie also made their thoughts and wishes known, so it was positive in that respect too. Sitting discussing Mum in this way got to me again and I couldn’t restrain the tears.

I had attempted to see Mum before the review, but she saw me coming and screamed at me to go away, so I went and did the laundry. Monica had a more successful attempt later. When her mum finally went into a home, they prescribed what Monica describes as a ‘Happy Pill’, which made a considerable difference to her angry, malicious behaviour. Monica clearly hopes that the Haloperidol will be a ‘Happy Pill’ for Avril, but it could have been Diazipam.

Anyhow, more anxiety over for now. We next await the RE Inspection at school and I await the interview for my job.


Three weeks later and the Haloperidol seems to be having a beneficial effect, Gradually Mum is mellowing again. They have found that she will take tablets orally if administered just as she is waking up. She is still different every time I see her, but each time a little better. I am so grateful for the positive changes in Mum. Maybe I’ll take Conor again next time. Last time I saw her she was much calmer, but talking such nonsense it was nearly impossible to understand anything. She seems to have renamed everybody and everything. She was ‘Aferbabby’ and I was ‘Ackally’, and I really cannot remember it all. But she was not laughing then (although I was).

Today she was laughing and giggling and busy trying to ‘sort things out’. I don’t tell her who I am any more, but I tell her what the boys have been up to and she tells me about ‘the to-do’ with the ‘people upstairs’ and all the things going on in her busy head. But she seemed so relaxed today. They said she’d had a cuppa just before I came and I persuaded her to drink a glass of water. She was talking to the water and trying to play the glass like a trumpet. Of course she got wet, but we were both in stitches.

She still has nonsense conversations with people in her head and is clearly very confused, but she doesn’t argue with me or attack me any more. It is great to enjoy each other’s company again.

I finished a tough half term at my school: the inspections both went very well and last week was a whole day of interviews for my job. There were four applicants including myself. I know my nerves got the better of me doing the teaching task and I bodged it terribly. I wouldn’t have hired me on that performance and I didn’t get the job.

For now I’m just thrilled for Mammy and I’m exhausted.