Week Thirty-Five

Mammy and her beloved Malc and their first precious Grand-child

Isabelle has endured her final chemotherapy at last. It has been horrendous for her, but she has carried it brilliantly well. She always looks beautiful and doesn’t moan at all. I think she will bounce back quickly and her head doesn’t look like a tennis ball any more.

Tomorrow Joshua has his own first ‘gig’ at an open-air festival. He has been busy revising for exams, whilst doing lots of band-practices for this special occasion. I’m sure I’ll feel proud to see him performing live on stage with his own music and lyrics.

***

Mum still has two yellow and purple eyes, but is much the same in her general state. Now I usually find her sitting in her ordinary chair with her legs propped up on the bed – I suppose they are nervous that she might fall again. I have been taking her outside for a walk as the weather has been quite glorious. Yesterday she was very wobbly though; it took her a long time to find her balance as she can’t seem to see what she is doing and mistakes patterns on the floor for obstacles. It makes me smile that the sort of words that she still speaks clearly are almost instinctive responses. So, if I say how soft and velvety the petals look, she says “Yes, I know!” Or she receives a strong taste or sound sensation and it will be, “Oh, that’s lovely/horrible…” Sometimes she will choose the opposite, so yesterday, when I gave her some cola to drink, she said “That’s nice and hot.”.

***

Simon has been made redundant, which could well be a blessing, as his work has been all-consuming since Christmas. Hopefully now he will be able to focus more on his exciting projects and innovations and get a business going. We might all need to tighten our belts for a while first though.

***

Today I found Mum dozing in a bucket chair in the dining room, but was first given some forms to fill in about Mum’s qualifications, employment history and such things, which did seem strange (and quite heart-breaking) under the circumstances.

The staff have been concerned again about Mum’s shaking, which seems to be more regular, and have referred her back to Neurology at the West Hospital. The appointment is for next Tuesday.

Two nurses took Mum back to her room and she sat smiling, eyes closed, doing her new sit-up movements. Heaving herself upright she would chant, then would slouch and be immediately asleep, mouth open and completely relaxed. It shocked me at first as it looked like she’d died. She is also very pale. I could not wake her with words or strokes, so I squeezed her knees and she jumped, again a few more sit-ups, song-jingles and out-for-the-count.

I was given a hot meal, dessert, cup of tea and medication to feed her with – in all it took over an hour until the plates were empty and all the time her eyes were closed. She would open her mouth to eat and then be asleep again…every time I squeezed her knee she would playfully growl like a tiger and giggle, but her sleeping was not fake. The staff reasoned that they had given her a bath this morning and it had made her tired. When she’d finished eating, she stood up, eyes still shut and began to shuffle away.

We had good fun today though; I really enjoyed her playfulness and having something to do. The nurse recounted a recent occasion, when a doctor asked Mum to open her mouth and she snapped at him like a crocodile and made him jump. She is funny.

***

Simon is setting up his business and I have been made a director. That is new, exciting and equally daunting. I need to make some wise decisions. I wrote down the things for which I feel myself responsible at the moment. The jobs are diverse and endless…but we do need to earn an income too.

I had to be at the West Hospital today for Mum’s appointment in Neurology. She was with two members of staff and looked very dopey, though they said they had not given her anything.

The Neurology doctor was most impressive. Whilst we were there he read through the salient parts of Mum’s two years in Neurology – the diagnosis of frontal lobe epilepsy, the EEG, etc – and asked me to describe exactly the sort of seizures that I had witnessed. Then he took Mum’s hands, spoke to her and touched her face and hands…he was very gentle. He then offered his diagnosis very clearly and confidently. He doesn’t think Mum has epilepsy, rather that she is exhibiting ‘Cortical Mioclonus’, which is very common with sufferers of CJD and Alzheimer’s. Frontal Lobe seizures usually happen in the middle of the night, in deep sleep, not during waking hours. The faints, he said, sound like ‘complex partial seizures’, followed by Mioclonus as she comes out of the faint. ‘Complex’ because her brain is so caked with plaque. We all experience some ‘Mioclonus’ – it is that feeling as you fall asleep, you dream you are falling and jerk yourself awake. That, he believes, is what Mum is doing. Apparently the Tegretol would need to be at least 600mg, twice a day, to keep epilepsy under control, but Mum is on 100mg twice a day, so it would not stop her having epileptic seizures anyway. The other point is that Tegretol does not control Mioclonus either. We could stop the Tegretol and put Mum on ‘Cepra’, which would control the epilepsy and the Mioclonus, but it could be very disruptive to her mood. The Mioclonus does not damage the brain, so we must consider if it is worth taking the risk of changing her medication. If the Mioclonus were causing Mum distress, or she began having seizures, then it might be worth trying the ‘Cepra’.

The other question he posed was about the dementia – now that Mum is so far gone in her dementia, the symptoms are pretty much indistinguishable, but it could be Fronto Temporal dementia, he thought, rather than Alzheimer’s. He said it might be worth doing another MRI scan, if we wanted to know for sure. Do we want to put Mum through that to satisfy our own curiosity, or not?

So, they are the two questions: MRI? Change to ‘Cepra’?

I still question whether I have done the right thing for Mum. I see her pretty face warm to life with affection and interaction and I wonder how different her quality of life might be if she had remained here with family around her. But I know that the physical environment would also be too challenging here now – with stairs and corners – and showering was already dangerous before…and the complete incontinence…but they are not insurmountable challenges.

***

Mum is still much the same. She has been sad/weepy/fed-up when I find her, but cheers up and is happy by the time I leave. Sometimes she just bursts into laughter for no apparent reason.

Last week when I went, the traffic was bad and I arrived at noon. I know they have ‘protected mealtimes’, but often I arrive before lunch and am able to feed her myself. When the nurse came to answer the door she looked at her watch and said that I could not come in because it was a minute after 12. I apologised for being a bit late and said that I liked to feed Mum, as she always eats in her room. I’d have thought they would appreciate the help, really. Eventually they let me in and I was able to feed a very tearful Mammy. We managed to get out into the garden for fresh air and a walk about too. I put her hair into two pretty plaits as I followed her around and fed her Turkish Delight and tea.

A friend has told me about the RCN deciding to be neutral about new laws on ‘assisted suicides’. I also read that the new Mental Capacity Act states that “doctors must now starve and dehydrate patients to death in some cases. And if they refuse to do this doctors – and nurses too – can be dismissed and treated as criminals.” “’Euthanasia by neglect for mentally incapacitated people”, was how it was described.

It could be just scare-mongering journalism, but I must investigate. Shocking thoughts. The article from RCN (on the BBC website) states,

The move comes as a survey for a newspaper suggests 74% of people want doctors to be able to help people to end their lives. According to the survey…, support for assisted suicide was especially strong among those aged between 55 and 64. The poll also suggests that six out of 10 people want friends and relatives to be able to help loved ones to die without fear of prosecution….”

[See “RCN neutral on assisted suicide” from the BBC News channel 25/07/09.]

Clearly the issues are very complex. Funding and quality of life being just just two aspects of that complexity from the state perspective. As with the question of ‘they shoot horses, don’t they?’ – we consider it ‘humane’ to put a suffering animal ‘out of its misery’, if it has no prospect of recovery. And how many people can our NHS support on it’s over-stretched resources? Allowing a person to die ‘with dignity’ – is this ‘playing God’? Or is keeping somebody alive on a machine, with no hope of recovery, also ‘playing God’. I believe in the sanctity of life, but I admit to not knowing and to respecting conflicting perspectives here. There are questions of who is responsible for what, who champions the cause of the poor… issues that we all need to address realistically. Still, I find the possibility of abuse of such powers disturbing.

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 Thirty-Two

Mammy loves the outdoors

On Monday I found the route to Mammy’s new sojourn much easier. She seems more settled, but was wearing hospital clothes as they still need to tag her clothes with ‘Gold Acre’ labels, as well as with name tags. She was in her room listening to Buddy Holly, as apparently she had been disturbed by some noise earlier. Her flesh was pale and peaky, but we spent a pleasant hour together before she began looking restless and lurched forward several times, looking fretful, so I asked if she was wanting to get up. She was, but I was unable to coax or lift her out of the chair, partly because I was afraid to further strain my back. I asked for assistance and two nurses came and hoisted her out of the chair. I realised that it was the chair that was to blame for the struggle, as it was designed for the sitter to be wedged in the valley of a deep triangle. Once out and standing she seemed very disoriented and unstable. She was ‘f…ing and blinding’, which is so out of character, and kept banging into everything despite her cautious footing.

We went for a brief walk around, but she was pulling against me and chose to go back to her room. I tried sitting her on a normal chair from which she pulled herself back up and indicated that she ‘should’ be back in the wedge chair. I helped her back into that and she calmed again. The doctor came to introduce himself and a senior nurse came to give me the paperwork and more forms to fill in. The doctor asked me why Mum was still on a ‘section’. I couldn’t fully answer that and felt that such information should surely have come with Mum in the transfer – certainly the assessment that his own staff had done should have been available to him. He seemed very amiable though and had a slightly playful demeanor. The nurse asked me to supply Mum’s toiletries and things and I promised to bring a better selection of Mum’s music. I was concerned about Mum’s general health and let the nurses know that as I left. They assured me that they would look after her. I believe they will.

***

Our house is still very cold and full of brick dust and mess. The new stove is still in the process of being piped in and we have suffered leaks and floods this week. Josh is taking over the task of digging my vegetable patch over and enjoyed the pleasure of having a robin sit beside him to sing for his supper as he worked at picking out the weeds. It was a beautiful moment for him and it gave me joy to see them both.

I took in the CDs and toiletries, but it was a quick visit as Isabelle’s second dose of Chemotherapy went much quicker than anticipated and I was to taxi them home again. However, Mum was in her own clothes and seemed much more content. She was sunk into the chair in her room again and we played one of the CDs. My new routine is to cream her face with ‘Oil of Olay’, which for me is Mum’s special scent. She enjoys the sensation and the contact. I noticed that her face seems very flaccid and dopey – her mouth seems to hang half open in a ‘gormless’ expression as her eyes flicker and stare at nothing in particular. But she didn’t look as pale and a nurse commented on how well she had settled in. As I left she smiled and admonished me to ‘be good’.

***

On Mothering Sunday she was in her room again, Buddy Holly still playing. I seemed to make her jump as I came into the room. She appeared very jittery and agitated. She was unwashed and greasy too, so I feared she might be experiencing problems again. I switched the music off, which she seemed to appreciate. She kept saying that she wants to go home and wants to go to bed. She was crying and moaning, then apologising for ‘being silly’. She did seem to be tired, but it didn’t seem like a good idea to indulge her in sleep at three in the afternoon. I fed her a ‘Fry’s Turkish Delight’, which relaxed her enough to talk and laugh again. The nurse had only praise for her progress and anticipates that they will take her off the ‘section’ at the next review. That will mean she’s able to go out again. I really enjoyed my time with Mum today.

***

On Thursday she was still in her room, but was looking much better. Another dose of ‘Turkish Delight’, Oil of Olay and gabble about something and nothing. I dropped in on Monica again on my way back home to take her a 70th birthday card and some chocolates. She wants me to take her to Mum’s next time.

It’s great not having to do Mum’s washing – it actually frees me to go more often, as I don’t have to wait till all the laundry is dry.

Meanwhile I’ve been chopping up lots of wood – the boiler stove is finally in place and, after a few leaks, is now burning as much rubbish and wood as we can feed it and is working well. It keeps the dining room particularly cosy, but also heats all the radiators and the hot water tank.

***

Sunday was a beautiful clear blue sky, warm and still. The nurses had brought Mum out of her room to meet me, so I took the opportunity to take her outside into the sheltered ‘garden area’. Mum was very shivery and unsteady on her feet as I almost dragged her out. We sat in the sunshine, Mum wrapped in scarves as we began to sing, laugh and make jokes. She seemed to get ‘You are my sunshine’ into her brain and couldn’t get it out again. It made us both laugh and we tried to find alternative songs to dislodge that one. We had a fantastic time for about an hour, until Mum began to feel the cold again. She looked so pretty out in the fresh air and I took a few photos. It felt like a real milestone had been reached and I’m now looking forward to more trips out with her. Again I left her happy and went out with a joyful spring in my step.

***

I’ve been thinking for a while that Mum’s face is looking different. It is difficult to discern as she is losing weight and has developed some peculiar mannerisms and twitches and will sometimes hold her head in a tilted position for no apparent reason. Anyway, she is beginning to look as if she has a wedge of chewing gum under her top lip. Debbie also noticed that she had a ‘monkey-mouth and nose’. Finally on Easter Sunday, when I took Monica, I lifted Mum’s lip to find a large white, bulbous swelling and filthy brown teeth. I was shocked. Surely if her teeth had been cleaned, anyone would have seen the swelling, which I presumed was an abscess. I called the nurse and asked her to make sure that Mum is seen by a doctor or dentist as soon as possible. She wrote it all down in the book reassuringly.

Mum enjoyed a feast of Belgian chocolates and we both had a lot of laughter with Monica. I prodded Mum’s lip, but there was no sign of any flinching or pain.

***

Debbie took Olivia and James to see their Nana on this visit for her birthday and Olivia made several short videos of them all dancing. It was a much more positive experience for them than the last time. Mum had six birthday cards altogether, from Monica, Julia, Debbie, me, Wendy and Tony. Tony’s card included another one of his poems. It is a touching poem, which he wrote 2 years ago…

SOLILOQUY January 2007 – on hearing that Avril will not be returning to Graemsay.

When I think of you I see flowers

pushing through the ragged grass

and you in your garden.

I keep the picture in my head.

In the tall grass of a garden

where wall meets wall at an angle

and little trees thrive, spore of silver lichen sweat

for times gone by.

I hear the roaring shingle at the shore

and see the moonlight

on the ocean’s rim.

The stars in the sky are singing tonight;

a myriad stars are singing and dancing.

One star alone is silent, drifts

down the night, silent.

I rage but she does not hear me.”

Copyright AR 2007.

“The roaring shingle…!

Week Thirty-One

My Nana with Avril and Julia as youngsters on holiday.

This week has been busy and different – fun even. As a school Governor, I have been eagerly involved in the exciting and a daunting responsibility of headship interviews.


Yesterday I enjoyed Mum’s company too. In herself she seemed content and playful. She was all clean, sitting alone in the silent music room when I found her.
“So, what have you got to tell me?” I chirped, holding her hands.
“Dabberdaberdada, batterbatter…Cacker a mama… and some food!”
“Right! That’s me told!” I laughed.
Mum was smiling, eyes closed.
“The babbers?..they OK?” she asked me. I said they were.
“Not much clucks, no!.. I just make ’em up as I do it.” She began to giggle. “The babbers are going off and badadaba…daft things!” Mum hooted with laughter and began to giggle hysterically.
“What is it, Mum? Come on, share the joke!” I pleaded.
“It wasn’t me; it’s Callus…I can’t remember now.” She flung her head back and pretended to snore, a wide grin across her cheeky face.
“Somebody else a popper da babasee plos…Yes!” she said, gesticulating knowingly.


I asked her whether what comes out of her mouth is what she had expected.
“No!” she admitted, but didn’t seem too concerned. Then she took a big breath and began an operatic piece, “Day, day, wee, lie twee lie tay lie… Bubbles!” She laughed…”Plopalopa tapatapa weeleelee…” And then to the tune of ‘Jingle bells’, “Da da da, da da da, an da way la day…”
“Mama, Mama” she suddenly whimpered in a sweet baby voice. And she answered herself, “I thought you were carrying on?…OK!…Wye ly wye ly and I lay day lay way and go go go to bed. Plop!” She made as if to snore again. “And they say – ‘Goodnight’.”


I began to laugh at Mum’s entertainment and make some equally meaningless, but encouraging comments myself. She was clearly having fun.
“Why, is it a man?…Because I like babbies!… That’s all right then…I want to go to bed and I want to stay on. Well you have to ‘Eeny meeny, tatty tatty, catter catter…Then you say, ‘How are you today!” She giggled again for some time…”Eh? Mister Matter Mat? Are they fighting?..Little bits, yeah.”
“You are playing, aren’t you?” I laughed.
“Yes, we are!”
I put a CD on – The Everly Brothers – and immediately Mum began to ‘da, da’ the tune, but used no words and all wrong phonemes. She was enjoying the music and after collecting her very smelly washing, I took my leave, smiling too.


It is a year ago since Mum left my home to live at Broad Glade. I feel sad remembering her having to go, still doubting whether I did the best thing for her.


I have just dropped Isabelle and Brian off at the hospital for Isabelle’s first Chemotherapy dose. I am looking forward to taking them home again later and knowing that she is fine. I want to see Mum as well, but Isabelle comes first today.


On Tuesday Mum seemed content and lucid – hardly babbling at all. I took her into the music room and we sang, danced and had a laugh. Her nails were ripped and jagged, so I pampered her nails. Then she showed signs of discomfort and agreed to let me take her to the toilet, change her pad and wash her hands and face.


I had been told that there were some student nurses doing studies on the ward and that one student had chosen my mum. I took my leave of Mammy and went to speak to the student, who was a fourth year medical student with many questions. He had already spoken to Mum and was wondering who “Cacker” was, but I have no idea.


Mum was wandering when I came out, but she was angry and distressed again. I tried to calm her, but she shouted, “Just GO, if you’re going then!”
So I stole a hug and left.


On Saturday she was clean and smiley and trying to converse in her light-hearted babbling. I helped with her tea and biscuits as she no longer uses her hands or eyes very effectively. I can put a biscuit to her mouth and she won’t think to tell her hands to hold or catch the biscuit once she has bitten into it. I asked her what she could see. She didn’t know. I asked if she could see her hands, so she held them up and looked at them. Can you see your wedding ring? She couldn’t, so I swiveled it around her finger, marveling on how it has been there for forty-five years. I asked if she could see me – she looked and smiled, “You look lovely”.


I got a call from St Peter’s Unit to say that I should not visit at the weekend as they are decorating the corridors, so I went to see Mum on Friday night instead. I haven’t done an evening visit for some time. Mum was in a gentle mood, clearly tired and wanting to go to bed. Her body seemed to be twitching in spasms, but not bothering her at all. She was hallucinating and talking to the babies; ‘Cacker’ was there it seems, but ‘Cacker’ is apparently not one of the babies. She seemed to enjoy my company and the back rub as always.


Yesterday I got another call from St Peter’s Unit, to say that a place has now come up at Gold Acre. Gold Acre is spacious, pretty, peaceful and strangely unpopulated. A nurse showed me around and I am very impressed. I think Mum will be very comfortable there. There is another unit for severely challenging behaviour that is separate from the rest. Opening hours for visitors is much more flexible (simply avoid arriving at meal times) so I hope Mum might get more visitors there. She will be taken there on Wednesday morning in a black cab. I think it will be better if I go up to see her when she’s arrived and settled a little, because too much fuss stresses her out. I wonder how she is going to experience the move, having not even been outside of the ward since last August? I’m sure the nurses are experienced in handling these situations and they will ease her transition gently. It is all moving once again into the unknown and a new era is beginning again for my mum and for me.


Chapter 18

Today I saw Mum in her new ‘home’. The staff at St Peter’s Unit had escorted her with her belongings to ‘Gold Acre’. I found her in the large dining room dozing on a two-seater settee. Nearby was a familiar face from St Peter’s Unit, strapped into a comfy chair and demanding a lot of attention. I engaged with the other lady a little, finding she had a mischievous but agreeable nature. There were three members of staff sitting drinking tea, probably having a breather after lunch; they said that Mum had ‘settled well and eaten her lunch’. I sat next to Mum and gently woke her, but it was a cross face that looked back at me.
“Who are you? What do you want?”
She seemed irritated and unsettled by the unusual morning and journey. She looked all clean and fresh and had had her beard shaved off for the occasion. I gave her some tea then suggested that we have a walk around as the loud lady was annoying Mum considerably. I could see a door to a pretty garden, but Mum said she couldn’t ‘be bothered’ to go outside today. All the names of Cacker, Caller and Avril came up with the ‘babbies’ again as she spoke to them, but she soon began to cheer up.


I looked at her room, which was not yet ready – there was a blow up mattress and sets of tools and cleaning equipment in the en suite bathroom. The wardrobe was still empty. Mum kept walking towards the window and bumping into the radiator. Then she would turn, walk and bump into the bed, turn, walk and bump into the door. She didn’t seem to be ‘seeing’ anything at all and was walking with a strangely tilted gait. I managed to steal a few hugs, but she just leaned against me, quite still and resigned. Still, she seemed to understand when I explained that I would need to go to fetch my babies and she let me kiss her goodbye. The nurses assured me that Mum would be well looked after.


On my way home I went to see Monica, to explain where Mum now resides and to update her generally. I find it hard to believe that Monica will be 70 this month.
It just remains to phone Mum’s sister Julia and her friend Wendy, who both expressed a wish to see Mum when she was no longer in St Peter’s Unit. I wonder whether they will visit her now?


Today Isabelle phoned to say that her hair is malting so much from the ‘Chemo’, that her husband has given her a close ‘number 1’ crew cut.

Week Thirty

Mammy on a snowy first footing only about 6 years before…

The dementia doctor has accepted that Mum will need fully funded Health Care and that ‘Gold Acre’ is the best place for her. She has agreed to apply again to Gold Acre. That means that I can go and have a look around. Hopefully, seeing the place will reassure me and at least some progress is occurring.
I’ve updated Debbie and she has spoken to Julia, who is feeling guilty for not visiting Mum.


At the hospital today, Mum was pacing the corridors and had a face like thunder. She was clearly distressed and angry, but I got her to sit down with me. She was quite unintelligible and was asking and answering her own questions with great belligerence. I got the impression that she thought she had had a fight and someone had something that belonged to her, but I don’t know. I got her to drink a glass of water, then began to massage her back and shoulders again. That did the trick. She loves the massage and her scattered words indicated that she wanted to be massaged like that forever. She smiled at me then and asked who I was. I said Dawn and she acknowledged that she has ‘got a Dawn’. I laughed and said that I was Dawn and she was Avril and she seemed to accept it and be happy. Whatever had distracted her before had now been replaced with a feeling of well-being and she was warm and responsive again. I kept up the massage as much as possible, whilst she soliloquised, “Who are you?… Avril… Oh, I see…and ‘Kaka?… I don’t know…It’s mine though… Over there…I’ll get it back.” The rest I couldn’t follow.


On Thursday evening I was at a ‘girls’ night. One lady asked how I know Isabelle and I was telling her about being disowned by Mammy, and Isabelle and her dad taking me in. The lady was horrified that my mum could have disowned me and, like many people, couldn’t understand why I then chose to take her in and care for her when she was in need. Immediately two Bible scriptures came to mind – “Honour your father and your mother” (Exodus 20) and “Father forgive them, for they know not what they do.” (Luke 23v. 34) I note that the 5th Commandment did not say, “Honour your father and your mother, only if you think they deserve it”. No matter what she did or does, she is still my mother, who brought me into the world. She did what she could, and it is for me to do the best with what I have and give all the love and support that I can.


The electric light outside makes the snow flurries dance and swirl like fireworks. This fabulous display lasts so much longer though. This winter has been so much colder than the last. Apart from my one ‘snow-drop’ there are only a few buds, no flowers at all, and it is already February. Today the garden is hiding underneath a thick blanket of snow. The path looks like a giant hop-scotch, marked out by thick white lines. It’s like Narnia, but without the white witch and with hope.
Today is day three of settled snow, but the sun has been shining and most of the roads are clear, although the pavements are still treacherous. The rooftops are dripping and all looks beautiful.


Yesterday Isabelle went to the hospital for her test results. I thank God she no longer has breast cancer. It has not spread. She has chosen a difficult path of chemotherapy and other drugs, which will continue over the next five years – to improve her chances of a long life with no recurrence of the cancer. We are going to celebrate tomorrow with a day of luxury at Eden Hall Spa.


More snow is forecast, so I went to Mum again this afternoon. She looked disgruntled and lost.
I approached with a “Hi there, you! Can I have a hug?”
She allowed the hug, but began to say, “No, it can’t…I’ve got to stay here…forever…I think…and Cacker and Tatter and Mammer…so they do!”
She looked as if she was going to cry, so I led her to a chair and we had another long hug. She indicated that something hurt in her body. I think it was her lower abdomen, so I told the nurse and tried to reassure Mum that maybe she is constipated again. With hugs, kisses and soothing words she soon cheered up. They gave her a banana flavoured ‘Fortisip’ shake, which I helped her with. She loved it. “What is that?” she kept repeating with sweet smiles. The smiles turned into giggles and raptures as I started to massage her back and shoulders again. Meanwhile, a lady with pink rimmed eyes and lilac eyelids sat smiling over at me, bemused by Mum’s changing expressions.
Another lady, who has been there nearly as long as Mum (I’ve never seen her with a visitor) hurries along the corridors, whimpering “Nobody wants me…nobody wants me!” Sometimes she will say that to a resident, but most of them do not know how to respond, so she rushes away again with a pouting, sad bottom lip and runs into the toilet. Then she starts again. She needs a hug too, I’m sure. Two of the men in there walk around trying to fix things and straighten it all out. They think that they are in charge. Nothing new there. A different lady was clutching a baby-sized dolly. She asked me some questions and I did my best to converse and to agree with her as I had witnessed her, moments before, having a shouting match with another resident. At least we were not in the room with the lady that always screams, “HELLLLLP!”
Suddenly Mum jerked and made as if to jump up. “I’d better get on with it!” she announced.
“What have you got to do?” I asked. “I’ve got chores to do… and the babbers!” she smiled.
I went to get the laundry and then left a more positive Mum to get on with her ‘chores’.


I’m glad I saw Mum yesterday. It looks like Nottinghamshire has closed down today due to snow. Most schools have closed as have lots of roads, so our day at the Spa has also had to be cancelled. Of course, Simon has gone to work. He will probably be the only one in the office.


Last night I watched a TV Programme – it was about Terry Pratchett and his fight against Alzheimer’s. (See Notes 4) He said that he wants to ‘make Alzheimer’s sorry that it ever caught [him].’ It is fascinating for me now to see someone in the very early stages of the disease, observing the first signs of deterioration. I was also interested to note that he was diagnosed as having the symptoms of a ‘variant’ of Alzheimer’s, known as PCA, where the back of the brain (normally associated with vision) is most affected. Listening to him describing his difficulties with hand-eye coordination, I was reminded of Mum’s earlier problems, although she was suffering definite memory loss too. Researchers on the programme were saying how ‘close’ they were to a breakthrough in finding a cure, but even Mr. Pratchett, in the early stages of the disease, admitted that he cannot wait that long. He had heard of a possible ‘cure’, – a LED light helmet – which he asked to trial. Subsequent tests revealed no further deterioration, but no improvements either. However, no deterioration is very positive, given the nature of the disease. I wonder whether he continues to use it. A doctor commented that he had probably had the disease for ten years before it was noticed. I don’t know whether that means that you either have it in you anyway (genetically), or that you somehow ‘get’ it and it takes a long time to manifest. I find that opens a string of fascinating and important questions. Anyhow, it also means that there must be a lot of people out there with Alzheimer’s, that don’t yet know it.


Now the heating has broken. Conor has lost his mobile phone whilst sledging in the thick snow and he is raw cheeked, cold and soaked through. But we had lots of fun and he is now outside, building a very tall snowman.
I did not go to see Mum yesterday as the trouble with the heating has meant that Mum’s clothes were not dry. Happily I could go today. Mum is still only sixty-two, but looks ninety-two. She appears to have shrunk even more – head bowed pitifully low, shaking, and shuffling along in green slippers, with the pockets of her cardigan scrunched between grubby, fumbling fingers. As I approached I watched her snap at someone, her greasy hair flat and wispy over her eyes. Despite her protests, I hugged her, her head buried in my shoulder bone. Her speech is becoming more unintelligible, but I knew she was distressed. We found a place to sit and I gave her some more banana milk-shake, lots of kisses and words of reassurance until she had melted again. She said she had five daughters and had lost them all. She was looking for Avril, Kacker, Tater, Acklewer and Wallerker…I told her that her daughters were safe and well and that she is Avril. Sometimes she smiles at me with a warm love and gratitude that is so beautiful. She is very receptive to hugs and affection at those moments. Other times she looks at me like I have three heads and horns…


I spoke briefly to one of the carers to ask him what he knows about Gold Acre. It is another hospital ward, so she will only stay there until her mood and behaviour are stable. Then she will have to be moved again. I thought that she was being kept at St Peter’s Wing until she was stable and then they would find her a permanent placement. He said Gold Acre is about two miles from the East Hospital. I don’t see the point in moving her twice.


When I returned from sorting her laundry, Mum was standing singing to a table full of people.

Week Twenty-Nine

Little Avril and littler Ju…

Yesterday Mum was sleeping in the chair, so I sorted her laundry and went back to wake her up, but I couldn’t. She was smiling and twitching and occasionally saying “yes…”, but her eyes remained closed. She managed to drink coffee, eat custard creams and enjoy a massage, all with her eyes shut. There was going to be no other meaningful interaction, other than stroking her hand and kisses, and I felt that she might prefer to be undisturbed, so after an hour I went to speak to the nurse. I had long since meant to ask about her medication – since the time I pretended to drink the ‘orange medicine’ and they looked a bit worried when I acted dopey afterwards. I wondered why she was so dozy now. The orange medicine was the Trazodone (100mg) three times a day. No wonder she is sleepy. The Haloperidol is just once a day and she also takes Carbomazapine twice a day. Apparently these are all to control her mood – mind, agitation etc. There is still no date for the Continuing-Healthcare Assessment, which needs to be done before we know what can happen next.

***

Chapter 17

Yesterday I hit a major low. I have been finding communication with Simon a cause of immense frustration since the end of November (when I told him I was pregnant). I have been trying to change this, but fear I have just pushed him further away. I am finding it difficult to sleep with ear-ache and blocked, streaming nose and racing mind. I think about these last two years: I have lost three pregnancies, two friends, a job, struggled with my Mum and feel I’m losing control of her care – having lost her too, in a substantial way – struggling with the uncertainty of her future and mine and adjusting to this new life in Nottingham. Last, but by no means least, my Isabelle’s recent challenge has also rocked my boat. She has had breast cancer, has had a mastectomy and is now on the road to recovery. Again I feel so grateful to live in the UK with a great NHS provision available.

Taking an inventory of all this loss was illuminating. I think I need to be a little kinder on myself and on Simon. We both need to learn to have a little more fun together and enjoy what we have whilst we still have it.

Anyway, Mum was in much better form on Sunday, and was contentedly gabbling away, making up what sounds like fun little rhymes with sounds.

I have discovered that Haloperidol is an old-style anti psychotic. It is commonly used in hospitals, to control agitation and hallucinations – symptoms of schizophrenia. It blocks the production of dopamine and has a sedative quality. But its value is questioned by those researching Alzheimer’s Disease. Apparently ‘care homes’ usually take their clients off Haloperidol as soon as possible. It is thought to produce a severe stoop and a general comatosed, dependent state. The Carbomazapine is Tegretol to control the epilepsy.

Mum’s mood has definitely improved since she began to take the Haloperidol and she appears to be much less tormented by hallucinations and psychotic behaviour. But yes, she also appears stooped and pretty well comatosed much of the time.

I felt nearly human enough to venture back to see Mum today. She was sleeping when I arrived, so I sorted the laundry before waking her. She was quite disoriented and kept dropping the biscuit that she’d been given, whilst I held the cup of tea. She was also very jerky – huge sudden involuntary ‘starts’ that she seemed completely unaware of. It was alarming. The cup of tea went down very well though and then she started singing. It was hilarious. There is no way I can convey the experience as I beheld it. She was talking to someone invisible to me and then began to ramble – “Wee lee dee baba kaka da, wee dee wee dee dada moko daba, POP!” Then she would laugh and say “What was that?… I’m being silly… You dabada!… Shall I go again? All right then – Wee la ba da ba…”

I said, “I think you’ve gone daft!”

And she whooped and clapped with delight, “Yeah!”

To the annoyance of a frail old lady next to me she continued for the whole hour, but was clearly having such a wonderful time herself. Eventually she stood up to entertain more fully and began to sing even louder, but this time the sounds came to the vague tunes of “Old MacDonald” and “Jingle bells”. It is difficult for me to do justice to the poetry, but she clearly knew what she was singing. Once she stumbled over the flow and started shouting, “Bugger, Bugger…” until I said, “Mother!?” and she laughed, saying that she had forgotten.

“Am I stupid?” she asked.

“No, but daft as a brush and twice as hairy!” I replied, to which again she rejoiced with cheers and laughter. She looked and sounded happily drunk.

It must have been quite a surreal sight, me alternating between massaging Mum’s back and plucking the beard out of her chin; Mum laughing ecstatically and chanting her rhymes; and another lady leaning over me, kissing my head and telling the wall that I was her grandson.

***

I’m having one of those mornings of racing morbid thoughts:- If it’s all down to genes, I’ll either get a heart-attack, cancer or dementia. But as Josh once said, “We have to die of something. These health freaks will feel a bit daft in hospital when they are old and dying of nothing!”

I am trying to justify my existence again, busy with various projects and people, but because I am not earning an income, I feel wrong, restless and my confidence and self-esteem are very low. An important project for me at the moment is to sort Mum out, but I am finding this waiting process very frustrating.

***

I feel a bit more cheerful now, after a call from my lovely Isabelle. Her dressing is removed and her wound is healing well. She also has permission to drive again, which will be a great relief. Meanwhile the sun is beaming out through the January rain and a little snow-drop has appeared in the garden. I’ve been doing some digging recently and I am so much looking forward to the delight of Spring splendour and itching to get some fruit and vegetables planted.

***

I got a call from the Social Worker on Wednesday morning to invite me to the Multi-Disciplinary Meeting (MDM), which was to take place that morning at 11am. I wished they had given me more notice as I had already arranged to spend our anniversary with my husband.

I told the Social Worker that I was nervous about what would happen to Mum if the home she goes to should take her off the Haloperidol and her hallucinations and torment should return. He said that he’d seen her on Tuesday and she was looking very dishevelled and distressed. She had looked greasy and unkempt on Monday too, but I didn’t ask anybody why, as she had been in such good humour.

The Social Worker phoned me back later with feedback from the meeting. It was much more inconclusive than I had hoped. Apparently two nurses had done the ‘Continuing Care Assessment’ and had agreed that Mum was not at all ready to be discharged. They felt that the only place suitable to meet Mum’s needs would be the ‘Gold Acre’, which I remember being mentioned to me last Summer. What I hadn’t realised was that Mum’s dementia doctor had put in a recommendation for Mum to go to the ‘Gold Acre’ weeks ago, but that the staff at Gold Acre had refused her on the grounds that they didn’t agree that she needed their level of care. Apparently, ‘Gold Acre’ is a brand new NHS unit, offering ‘excellent care’, but their budget is restricted and so they are not able to employ enough qualified staff to run to capacity. It also seems that they do their own independent assessments of appellants and, strangely, do not consult with any other professionals or interested parties. The nurses doing the assessment on Wednesday, on the other hand, are of the opinion that Mum will continue to need at least the same level of care that she has had in hospital and that any other care home would not be able to cope with her needs and therefore she could end up being readmitted to hospital. That is my concern too.

I was surprised to learn that Mum’s dementia doctor was not at the MDM either, so we will now have to wait whilst she reads the report and makes her response. The nursing team also recommended that Mum’s medication be reconsidered and that Mum’s doctor should reapply to Gold Acre for a place.

The Social Worker said that Mum was even more distressed and “vocal” (shouting and angry) on Wednesday and that she seemed to be in a very tormented state again. He said that she was still unwashed, because apparently she is being very uncooperative with the staff in the mornings.

I have arranged to see Mum’s dementia doctor at her earliest convenience to discuss these issues properly, but that meeting may not be for another four weeks.

Anyway, I’m going to see Mum again myself and see if I can make any more sense of the situation.

***

Well, she was fine with me if a little dopey again. She was smiling, singing her own version of ‘Daisy, Daisy’ and copying some of the voices and sounds around her. She was well laid back on the sofa and still very twitchy. Occasionally she would lift herself up to a sitting position and then lower herself back down again – like a version of ‘sit-ups’.

She greatly enjoyed some chocolate and we managed a sort of a conversation – I asked many questions and she made various responses. She thinks that Wendy has been to visit her, but not Julia or Monica. She can’t be bothered to do the gardening any more and doesn’t miss Orkney. She cannot remember much about her mum or dad, but thinks that Julia was bossy. Being a mum was sometimes really lovely, but sometimes ‘Brrrrr!’ She’d like to go and look at the Spring flowers when they’re out in bloom, but she is a ‘big baby’, even though she thinks she is not big.

I asked a member of staff about the greasy hair, wondering whether her fear of water had returned. Apparently this week, the nurse said, Mum has been distressed, difficult to handle and shouting in the mornings, but she is going to ask the night staff if they’ll bathe her this evening. She was unsure, but believes that the doctor may have already made some changes to her medication.

Mammy loving the abundant garden at Porchester Road

Week Twenty-Eight

Mammy with her “babby-wabbies” on her 21st birthday.

I am continually surprised at how much happens in a week. Ana was with us for the weekend and, after taking her back to the train station yesterday, I went to see Mum. The staff were singing her praises and saying how she’d eaten six slices of jam on toast for breakfast. Mum seemed very lucid, but then began the conversations with herself again.

“So how do you like it here? – It’s OK I guess, but there’s not a lot to do. Is it Cocker?- I don’t really know. I just sit and watch.- Oh, that’s good though, isn’t it? – I suppose so…”

“I’ve got a fella!” she suddenly confessed.

“Oh, another one? Where is he?” I wondered, laughing.

“He’s here and there…but it’s like that…she came up and you know…DAWN,” she suddenly shouted, looking behind her, “Are they all right in there? – Yes, it’s Tatty and Blatty.- They’re OK then, the bobbies? – Yes. – That’s good then. Tee hee!”

A couple of times she had these conversations with ‘Dawn’ and about the bobbies and babbies.

Then she squashed her fore-finger and thumb like a mouth and said to it, “Isn’t that right babby-wabbies? – Are you not going to answer me then? – No, ‘cos we’re not really here!”

Then she exploded into hysterical laughter at the fun of it.

I was hard pressed to follow her today. But she was in good form and most of her soliloquies were positive. She enjoyed a back massage and took part in ordinary conversation too. She asked about the boys and the second time she added, “but I’ve asked that already, haven’t I?”

I wish I could record her words accurately, because I do find it fascinating. Her speech follows no normal logical syntax or semantic pattern. She also said something about being ‘ready to come out of her mind and be normal again’, but I forget the exact words. If only it were that simple, wouldn’t it be wonderful if she could choose!

I wanted to tell her my news, but didn’t. I’m pregnant again. Today I was busy making appointments for doctor/midwife and a haircut. I’m waiting to hear from Debbie too, because she’s finally gone over to Graemsay to show a prospective tenant around ‘Clett’. It will be good for the property to have someone living there – especially over the winter.

***

I took Conor on Sunday. Mum was in a gorgeous mood. She seems like the only sane one there now. There was a man wandering with his pants around his ankles, another kicking and fighting the nurses, another trying to grab hold of Conor – he was very brave, but his face told a different story. Mum just kept smiling through it all. I do want to get her settled somewhere a bit calmer.

On Tuesday I spent a leisurely morning preparing to go for my 8 week scan – enjoying a luxurious shower, admiring my firmly rounded abdominal shape and my boobs like huge ripe lychees. I felt beautifully pregnant. I wanted to go alone for the scan, because Simon was nervous and I wanted to stay positive. Entering the ward I encountered the nurse who had talked us through our last bereavement, 16 months ago…

The scan was the same as the first – almost exactly two years ago to the day. I went for a hot drink, devastated, sent Simon a text and drove home. I told the boys and tried not to feel anything.

I feel very blessed in my Spirit. Part of me, emotionally and physically, is scared about going through another miscarriage. The last one was almost unbearable. Isabelle came over to support me whilst I made arrangements with the hospital for a surgical evacuation (sounds very cold and clinical and I tried to keep my thoughts that way) and phoned school with my apologies. I shed my first tears for the baby I will never know. Isabelle accompanied me for the pre-op tests and forms. The operation was scheduled for Friday morning. I appreciated her company – spending over 3 hours in the hospital is never a pleasant experience.

***

On Friday – yesterday, I was there for eight and a half hours, but I drifted through most of that in anaesthetised, semi-consciousness.

And now it’s all over again. I still look and feel physically the same as I did on Tuesday morning. Emotionally I feel quite different, but I am still blessed.

I’ve not been to see Mum for a whole week. I hope to go tomorrow – for, if nothing else, she will be needing her laundry. And I need a ‘Mammy hug’.

***

Mammy intuitively knew that something was wrong, so I told her and enjoyed a proper cuddle. I had brought Christmas cards for her to send, as promised. I reminded her of people, like Wendy, Tony, Debbie etc. and as she approved, I wrote… “To Debbie…” and she added “and all”, which I wrote and then “with lots of love from Mum?” and she nodded and added again, “and all!” And so we continued for seven cards. She was dressed in a pretty, sparkly jumper, which I didn’t recognise, but I took a photo of her looking so lovely – the first I’ve taken since she went into hospital nearly 5 months ago.

I am trying to imagine the transition, which has to happen, from hospital to some new place. After all of her previously active outdoor life she has been cooped up in the hospital with not one walk out of doors for all of that time. I don’t know how it will be for her – exhilarating or unpleasant? Last week I told her about Tony, who is moving house yet again and she shuddered and said she was glad that she didn’t have to move. But she does.

Today I spoke at last to the Social Worker. He apologised for being so busy and said that he has seen Mum twice since. He observed her today – singing away, but then she became fixated on some thought or hallucination that distressed her for some time. He said that the ward staff had given a generally positive account of her mood, improvement and well-being. Apparently we are waiting on an overworked somebody who has to do another assessment, before we can look for a placement. It was hoped that we could have it done before Christmas, but this is not looking promising. When that is done we can all meet up and discuss the ‘What Next?’ question. I aired my concerns about taking Mum out after so long indoors. I would need to request a ‘consent for leave’ apparently (as she is still under Section 3), but it might be possible to take her out with a member of staff into the secure courtyard for a time and maybe, another day, take her for a walk around the grounds.

This next stage feels scary for me. I want to make sure that I get it right for her. I don’t think I did last time. I’m sure they will give me sound professional guidance.

It is nearly Christmas. This time last year, Mum was at home with us and Pat was around the corner. We just do not know what is around the corner and we really have to live the best of each day and be grateful for every blessing.

***

Today is the Epiphany 2009. Ana shared Christmas with us and has returned to London. I have Catalena with me now and Little John has been too. Friends are priceless.

My priority now is to do some thorough research of ‘homes’, so that I can find the perfect place for Mum to move in to.

I took the boys to the hospital on Christmas Eve. Josh was very worried. He hadn’t been to see Nana since she was sectioned back in August and he very nearly bottled out of performing in ‘a mad-house’. As the boys began to play the carols, Josh on guitar and Conor on flute, residents began to gather and join in the sing-along. Mum was right beside us, singing and blubbering happily. Before long the carers had brought half the ward along and we had to repeat our rather limited repertoire. It was a wonderful atmosphere. I went around with a box of Belgian chocolate biscuits and really felt that Christmas had finally arrived. It was amazing how these dear people, many of whom have forgotten who they are, yet, when the music begins, they can sing all three verses of ‘Away in a Manger’, word perfect. The power of music on the soul never ceases to strike me as remarkable.

Josh actually enjoyed the experience in the end. I am sure he will perform in alternative ‘mad-houses’ with his band. He did get a bit worried when one of the patients wanted to tidy his music book away whilst he was playing. ‘Who is this guy?’ Josh’s eyes mused. But he was pleased to have overcome his fear and done something good for his Nana and for others.

I was very proud of them both.

When we first arrived at the hospital Mum was looking more miserable than I’ve seen her for a long time. As I sat her down she was able to say that she ‘just wanted to go away – completely – and not come back’. She took pains to assure me that it wasn’t the place or anybody else’s fault, just her – ‘being mardy’. But the carols made her forget and she opened her presents and cards with child-like anticipation. It was a jolly Mum that we left behind.

A Boxing day photo from long ago – about 1978

Week Twenty-Seven

Chapter 16

Celebrating! Merry Christmas everybody. xx

We enjoyed a fairly quiet half-term week, but this weekend was full of activity and celebration – including Conor’s birthday, parties and fireworks.

On Friday afternoon Mum was still in good form. Her clothes showed evidence of custard and I watched her drink tea and eat a milky way bar. She also drank water and sang to the cup again. She seemed calm and less bothered by imaginary worlds. She played and laughed, let me hug her and enjoyed me massaging her back. It was great. I didn’t want to leave her this time, but I had to get the car back for Simon.

Today I got a call from another doctor, who described a seizure-type manifestation that Mum was having this morning and asked me about the seizures that she had experienced in the past. It doesn’t compare at all. Apparently the top part of her body just trembled violently for as long as you might wave, but it was occurring every 20 seconds this morning, so they called a doctor to watch her. By this afternoon, the ‘shakes’ were happening roughly every 20 minutes. I asked if this was perhaps a side effect of the Haloperidol, but she said not. I took the opportunity to ask about the dosage. They are being cautious with the new drug and started her on 0.5mg. They have now increased it to 1.5mg.

Apparently they all cheered as Mum ate a proper lunch today and she was sitting laughing with a bunch of ladies this afternoon.

Then the doctor asked a sobering question that took me aback: If she gets very sick, do I want them to resuscitate her? I had to ask what this means in reality, because if she gets poorly I want them to treat her as they would any body else. What she meant was, if her heart stops of its own accord, do I want them to give her shock treatment or resuscitate in any other way? She made it clear that they wouldn’t advise resuscitation and that, although they like to consider the wishes of family, legally it is a medical decision that would be made by the doctors anyway. It is a scary thought – that the doctors carry such power – particularly when you hear of cases of abuse of that power and the growing sympathy for ‘euthanasia’. But, on the other hand, if it was her time to go, I sure wouldn’t want to hold her back to suffer any more, when she could be set free and enjoying heaven. To deny her death, when it called, would be much more cruel. I have not actually thought about her dying yet. I have been more concerned with the quality of her living.

Still, at 62, I can’t see her leaving yet. I must speak to Debbie about it and phone Monica to give her an update – she might fancy coming with me tomorrow.

***

Monica did want to come and was delighted to see her back in her happy and ‘naughty’ mood. She has such a cheeky laugh. Monica had received some poems from a good friend of Mum. I read them aloud to her. The poems convey such sweet fondness of memory. They tell a story of Mum and life on Graemsay island. This one is about her home, Clett.

‘Avril’ by A.R. February 2007

If you came by Windbreck over the hill

or by Scarataing under the broken cliffs

to the silent house above the shore

it would be the same: your wall stands firm

and the tall ships of your willows blow

and all is well.

The raggle-taggle fuchsia by the garden door

in hard midwinter waits

and in the rank grass sleeping now,

Veronica, wild iris, rose, montbretia, meadowsweet

in innocence and silence wait

and all is well.

A stone hut by the shore

stone on stone to the eaves,

a flagged roof, a plank door.

Remains of tackle, tar, caulk, creel,

scraps of net like lace.

The season passes.

From the South West a breeze

bringing hope and resurrection.

[Copyright A.R.]

A stone hut by the shore….

He also wrote another poem for her.

First he wrote: “Do you remember the stone wall you laboured at? It was magnificent. You wore out two wheelbarrows. We used to work at it in all weathers and if the rain came on too heavy we would retire to the house and drink gallons of tea. Remember? I enclose a small poem in memory of that wall and its builder and I send it with my love.”

Waller’ by A.R.

Stone waller, my dear, dry-stoned and love laboured.

With stone all day labours, lovingly,

each stone caresses. No line;

eye alone is her level.

Stone waller, my dear, day long

in her garden. Dogged. Stubborn.

Stone from the shore, sea quarried,

wheelbarrowed and muscled,

stone-bedded and blessed. Stone,

stone, stone,

stone

shelters rose, willow, wren.

[Copyright A.R.]

Mammy’s stone walls, sheltering her garden

I read the poems twice out loud and we talked about the images and memories. Mum built the walls from stones off the beach, to protect her shrubs from the incessant wind. I’m not sure how much sense Mum actually made of the poems, or how much she does remember. I love the poems.

Monica enjoyed talking about her memories of her two years living with Mum at ‘Clett’, and talked for all of us in her very entertaining way. Mammy was able to respond with independent comments and contributions though, just like her old self. As we were leaving, Monica asked if we could come again. Although I genuinely cannot recall her words, her response reminded me of the time I first visited Mum and Dad in Orkney – that she would be glad when I left, because I disturbed her routines.

Memories of Monica living with Mammy on Graemsay and mad parties

The junior doctor, to whom I had only spoken on the phone, came in and introduced herself. Fortunately she didn’t ask again about the ‘resuscitation’ issue.

***

This morning I had a funny memory – years ago, my friend, Little John, used to tease me for always saying, “I can’t remember”. Today I remembered that as a young child at the caravan, my mum once made me write 100 lines, saying, “I must never say ‘I forgot’.” After that I tried very hard instead to admit that “I can’t remember” One wonders if there is a faulty memory gene in the family.

I was also musing over the changes in Mum’s life since Dad died. In the space of a few years, Mum did so many new things with her life. She began driving again – something she’d never done since passing her test in Nottingham some 15-20 years before. Then she did a ‘motor-mechanics’ course in Kirkwall. She ran the Post Office on Graemsay and did a computer course. She worked voluntarily for the ‘Red Cross’ in Stromness, bought a guitar, took lessons and began to play guitar at the church services. When applying for the job as ‘Sub-postmaster’, Mum listed her hobbies as “Designing; Knitting; Gardening, Music; Watching boxing, ice-skating and gymnastics; Languages; Science and Computers.”

It seems so sad that Mum got a chance of an independent life at 49 but within 10 years was completely incapacitated with this dementia. I wonder what made Mum’s brain go so quickly? Did the brain rebel against having choice and freedom? Did she miss the routine, challenge and suspense of living with Dad? Was it a lack of stimulation? Is it a genetic predisposition? Do I carry those same genes? Do infections, strokes or knocks on the head cause its onset? Or is dementia simply no respecter of persons and comes to devour whomever it wills? Does anybody know? I have looked for explanations, but few are offered.

***

On Sunday Mum stood motionless in the corridor with tears wet on her cheeks and droplets falling from her nose. She seemed so totally dependent and vulnerable… She had no idea why she was crying and said that she didn’t want to live any more. She probably feels totally alone in her world. But she asked after the boys again and soon we were singing and dancing to Roy Orbison. I left her smiling and dancing, but again I feel like I have abandoned her.

One of Mum’s key workers phoned yesterday to ask permission to give Mum the flu jab. I took the opportunity to ask questions in general. She answered that the consultant had wanted to reduce Mum’s medication now that she is doing so well, but that the staff had argued (and won) to keep her medication as it is, because she is doing so well. They are all very pleased with her progress.

In terms of her future placement, reading between the lines, it looks like it will be after Christmas before they attempt to place her. They want to see her properly settled and stable first. I think it will be better for Mum to be in a more homely environment where she can perhaps make friends and have her personal belongings around her again. Maybe she still likes going out walking. I do hope that there will be a suitable home for her within Nottinghamshire. I will contact the Social Worker soon to see what recommendations and time-scale he is considering.

I think I have been very well guided by the Social Services and support teams throughout these two years caring for Mum. I could not have managed alone and they have truly provided where I could not. It hasn’t always been the kind of care that I would have desired, but it has been an invaluable support and I take this opportunity to say a big ‘thank you’ to everyone that has been involved in helping to care for Avril. We are so blessed to have the NHS in this country. Of course they cannot work miracles and are not perfect, but they do provide a wonderful service to so many needy people, who otherwise would be suffering alone.

***

I’m just back from seeing Mum again tonight. I felt that she needed a hug and am so glad I went. I thank God for these precious moments. If she were still in Orkney and in good health I would probably still not have seen her since my wedding. I may never have had the chance to know her. But it’s a tragic price to pay for closeness.

She seemed down-in-the-dumps when I arrived. I began to chat and recognised the song, ‘Are You Lonesome Tonight’ playing somewhere near. We located it in the big empty lounge and began to dance. It was so good to sing, smooch and jive our way through 18 fabulous Elvis tracks around the big room. At one point I looked up to see two nurses smiling at us through the window frame. I felt like a goldfish in a bowl, but very proud. I was even offered a cup of tea today. Again Mum’s key worker reiterated (in a whisper) that, although she was handing me the Care Homes’ Directory, they were not in a hurry to send her away.

I wonder whether I might be allowed to bring Mum out at all? I think she would like to be involved in some carols and Christmas events. I could always take some Christmas spirit to them instead – maybe Conor could bring his flute and play some carols. They would all enjoy that I’m sure.

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.