PEACE DAY AND ALZHEIMER'S AWARENESS DAY

Today is Peace Day and World Alzheimer's Awareness Day and I've been wondering how I could connect the two.  One way is obvious and I'll repeat what I have said in some of my Breast Cancer Awareness posts - that if governments spent on life one iota of what they spend on killing people, cures for so many diseases could be found.

But there is another way in which the two causes are connected and I think this is especially relevant now, as we lose the generation that lived through the Second World War and as those of us who remember the shocking images of the Vietnam War age and, children of "peace and love" as we were, perhaps become disillusioned.  The recollections of those who have seen war in their time are important resources for all of us;  without them we may dismiss the horror of war and we must never forget or let go of our ideals of peace.

At Christmas 1914 the guns fell silent all along the Western Front as men on both sides of a terrible conflict remembered they were human, in some cases just for one day.  But if we can remember our humanity for a day, we can do so for two days, three, 365 or more.  That is why I am supporting Peace One Day and the Global Truce planned for one year from now.

Let's face it:  governments everywhere have botched peace and they have betrayed the elderly and vulnerable. Peace begins where individuals reach out to one another and we can make a start by treasuring those around us.  Each memory is a precious drop of rain which we must collect in our thirst for peace.

SEAWEED MAY TREAT ALZHEIMER'S DISEASE

The image about Alzheimer's in the sidebar and above is explained in the last paragraph of this article of mine which was published in Italy Magazine today. Long-term readers of this blog will know that helping victims of this cruel disease and their families is a cause close to my heart.

From the negative image of the Italian South generated worldwide by the events reported in Monday’s story, we move to a positive and hopefully far-reaching discovery made by scientists there: Giovanni Scapagnini, a biochemist at the Medical Faculty of the Università degli Studi in Molise, has found that a molecule present in seaweed may help to protect the brain from developing Alzheimer’s disease. It may also be effective in the treatment of the disease.

The molecule, homotaurine, may, according to Dr Scapagnini’s research, help preserve the hippocampus, an area of the brain associated with memory. In trials carried out in Europe and the USA brain toxins were reduced in patients treated with a drug containing the molecule. These toxins are believed to be a factor in the development of the disease. The patients’ reasoning also improved.

Alzheimer’s disease is a degenerative form of dementia for which there is no cure at present and memory loss is only one of its many distressing symptoms. It is most often associated with ageing but it can strike younger people too, although this is rare.Often the family of a sufferer also become victims of the disease because its effects can be heartbreaking to witness. Over 35 million people are affected by Alzheimer’s and other forms of dementia in the world and 7.3 million of them are in Europe. Over 1 million Italians are affected and it is estimated that there are 97,000 new cases in Italy every year. This amounts to a new case in Italy every 71 seconds. Dr Scapagnini estimates that by 2050 Alzheimer’s will affect three times as many people as it does today.

If you are in Italy between now and 31st January you can help Pronto Alzheimer, a helpline for sufferers and their families, by sending a text message to 48544 from any personal mobile phone connected to Wind, 3, Tim, Vodafone or Telecom Italia or by calling the same number from a Telecom Italia landline within Italy. Pronto Alzheimer will receive 2 euros for every message sent or call made.

DAILY DOINGS - 23

The water service, I am pleased to relate, appears to be functioning after weeks of being sospeso and the delivery lorries have been darting up and down narrow streets and in and out of queues of cars like vespa scooters in their hurry to get around to some very long-suffering customers. Yesterday I witnessed a fine altercation as a water lorry driver was trying to reverse into this street and found himself blocked by a car whose occupants were waiting to use a nearby ATM. The car driver refused to budge and finally the lorry driver beeped at all the other traffic, turned back into the main road and tore along it at at breakneck speed. I thought, "Oh, no, now someone won't get their water because of the selfish car driver" but the lorry driver did a three-point turn in a very narrow space, sped back, entered our street from the other direction and drove like Enzo Ferrari himself to his delivery address. This time the car driver got out of the way!

Now here's an interesting snippet of information from Rosa, who hears the world's news from her companions on the no. 3 bus. [Forget twitter, the internet and Reuter's - word gets round quicker on Modica's no 3!] There is plenty of work in Italy for donne di servizio or colf [an acronym of collaboratrice familiare - cleaner or domestic helper] and badanti [carers] but it seems that very few of them are willing to work for the elderly, particularly the elderly with dementia-related illnesses. Rosa has heard that people in their forties and fifties are now taking on colf, in the hope that the person will become loyal to their employer and stay on during his or her old age.

There were thought to be about 1 million colf in Italy in June of this year and it is estimated that 500,000-600,000 of these have entered the country illegally. However, under new legislation, from September each family will be able to register 1 non-EU colf and 2 non-EU badanti [provided these are already in Italy and provided the employer meets the income requirement in the case of the former] thus regularising their presence in the country. This will solve the problems of many working women but it isn't going to help the ailing elderly.

On we go: this morning Lucia visited, bearing a jar of asparagi which her husband had picked from their garden and preserved. I'm dreaming of all the nice risotti I am going to make with these and trying not to think of possible after effects!





I would like to be able to show you a photo of Leapy, but he's too fast for me! Leapy is a baby lizard [well, he was a baby when I first encountered him but he's grown some] who lives on the balcony. He darts out from behind my plants when I water them. But at the weekend, when I opened the gas meter cupboard [on another balcony] something moved very fast and I just caught a glimpse of Leapy. I worried myself silly in case he had got trapped in there and it was ages before it occurred to me that he knew the way in [through a grille, presumably] and therefore must know a way out. He didn't appear yesterday and I thought he'd gone back behind the plants but this morning there he was, leaping round the cupboard again. I don't know the first thing about lizards, except that I prefer them to spiders [but then, I prefer King Kong to spiders] so if you do, please could you tell me: is he intelligent enough to get out when he wants to? Is he sleeping in there? Should I put some water in the cupboard for him and, most importantly, should I try to get him out of there?

Raffaele the hairdresser has been working on his publicity again and has come up with a little booklet telling you about your star sign and how you can improve your life [by visiting the salon!] I think it's a neat idea:



As for me, I have at last [thanks to Lancôme] achieved tanned legs! Four years in Sicily and I have not managed this feat previously. I do find it hellishly difficult, if not impossible, to tan, and I really have the sort of skin that you should keep out of the sun. However, dear reader, if you had such pale skin and lived among the bronzed lovelies of Italy, you would want to go out dressed in a bin bag in summer! So this year I braved the tanning booth for 10 x 15-minute sessions [I know it gives you wrinkles and worse!] and the result? A slight tan [a tan on me would be a normal colour on everyone else] everywhere except on my legs and my face [the latter intentionally protected by total sun block and a ton of make-up]. Finally I decided that "the only safe tan is a fake tan" and did the deed this morning, after bathing, exfoliating, moisturising and all the other preparation. I'm quite pleased with the result and can face the world! By the way, in the July edition of Good Housekeeping [to which I have a subscription] a woman has written to the beauty editor to say that her husband hates the smell of fake tan. The editor replies that this "must be a male thing" so do tell me, gentlemen readers, is this true? My theory is that they put something chocolatey in it because I like the smell!



Some of you will know that, after water and the Sicilian post office, the bane of my life is the VBS [visible bra strap] and after that, any kind of inelegant garment strap. So why, oh why, are clothes designers putting straps on every top or sleeveless dress I see, sometimes up to 4 of the things? I could understand it if there was some semblance of a bra within the garment, as the straps would be needed to hold it up, but of course, there isn't and the straps are too flimsy to hold the garment itself up. Most of us will need to wear a strapless bra under these tops or dresses so what is the point of adding any straps at all to them?

Lastly, here is the ice cream of the week - croccantino all'amarena [crunchy stuff with black cherries] at Modica's Gipsy Bar:

RESPECT

Sitting on the Altro Posto's terrace at lunchtime my attention was drawn, not for the first time, to an elderly gentleman who sits himself down there for half an hour or so to have a rest, a cigarette and a glance at the comings and goings. Then he picks up his walking stick and continues [with surprising speed!] on his way. In winter, he sits inside. He never partakes of anything and nobody ever questions this. And he is not the only elderly or not quite so swift of foot person I have seen do this at various eateries here. I wonder how long you could sit inside or outside a bar or restaurant in the UK before being curtly told that you have to order something?

Now, I'm not quite sure why this is connected, but in my mind, it is: one of the matters Irma and I discussed over lunch the other day was the care of the elderly or terminally ill in Italy. Irma has a 90-year-old aunt who is today being fitted with a pacemaker. Nobody suggests that the lady is "too weak" or that "It might not be worth it", as might happen in the UK. As Irma says, "Whatever else doesn't work well in Italy, a life is a life and is valued." This does lead to tragic cases like that of Piergiorgio Welby, which regular readers will remember, but it also means that this and this could never happen in Italy. And there is certainly no postcode lottery regarding healthcare.

Where do I stand? I think these matters are incredibly difficult and often the circumstances are harder for the patient's family than the patient. I also know that I wouldn't have wanted my mother to suffer or linger longer once her mind had disintegrated to the extent that it did - and she wouldn't have wanted it herself. Yet I am rather glad to be living in a country where, if I make it into old age, I am not going to enter hospital in fear of a "Do not resuscitate" notice being put on my notes even if all my faculties are functioning.

MUM - 4

“Love is not love
Which alters when it alteration finds”
- Shakespeare, Sonnet CXV1

This is the continued story of what happened to my Mum. It has a bearing on why I am here in Sicily today. [I know it is long so understand if some of you do not wish, or do not have time, to read it.]

2.7.93
In my diary I had written, “Now I know what Dr. S meant”. For a few precious moments, Mum was lucid. We take “normal conversation” for granted, every day of our lives, but now I was so grateful for a semblance of it! I wrote, “You are not quite my mother, but you are as my mother might have been in 15 years, had ageing taken its natural course”.

During that week I also wrote, about myself, “goddam failure of a woman.. I see women older than Mum every day, on the bus, with their grandchildren and I did not give these to Mum. So it is my fault.”

4.7.93
A Sunday. Mum was agitated and almost like someone who was drunk. I wrote that her hands were reaching out like those of a beggarwoman - or someone in Bedlam. All modesty was gone. Yet she managed to say, “You’ll always remember me?” If my heart had not already been broken, I think it would have broken then. Her fingers started to turn purple that day. I pointed it out to the housewoman - they hadn’t noticed. Sue [my nursing tutor friend] said it was the circulation beginning to close down. During the night Mum got very agitated and they sedated her again.

5.7.93 - 6.7.93
Mum was pitiful to see. She was sedated and seemed to be obsessed with her hand. [She had had a carpal tunnel operation earlier that year and I think it was something to do with this.] Her eyes, unseeing, opened once or twice.

7.7.93
Mum was rambling again. I wrote, “All I want to do is fling myself across the body of this woman who used to be my mother and cry deep into her shoulder as I did as a child.”

9.7.93
The registrar said she had come full circle. Mum was now cantankerous in the way that she had been during the first few days. She talked to me of spiders, snakes, pebbles and “clinkety clonky”. She asked, “Why don’t they come?” I assumed she meant the doctors. I said they were dealing with a lot of ill people. She said, “And Dad is one of those people”. I wondered if that was what it was all about?

11.7.93
Mum was talking, but confused. I left her for 15 minutes only, but when I got back she was that yellow colour again, and was again being that cantankerous person whom I didn’t know.

12.7.93
The day began badly with one of Joan’s calls. [ Joan was the deputy head of my school.] I got to the hospital and 2 physiotherapists were trying to make Mum stand. It seemed such a cruel thing to do, but maybe they were worried about clots forming. As soon as she saw me, Mum started sobbing and clung to me. I started crying too and the 2 physios, who were supporting her on either side, burst into tears as well! Then they just left - they realised this was no place for them.

13.7.93
They’d moved Mum again - this time to a side-ward at the other end of the ward. Her ranting had disturbed the woman in the next cubicle.

14.7.93
Mum was talking deliriously about her own mother and making dough. She was still obsessed with her hand. Later she shouted at me and I went home because I could take no more that day. In the evening I got another insensitive call from a male colleague.

15.7.93
I went and bought an answerphone so that I could at least filter my calls and would have some warning if it was Joan. Mum was still talking about spiders. At one point she said, “You will protect yourself, won’t you?” I noticed that her lovely dark lashes had suddenly turned all sandy. [Her hair never did go grey.]

16.7.93
A psychiatrist came. Later a junior doctor devastated me by saying that he thought a nursing home was possible. Hadn’t he even looked at her?? I thought, “Is this how it’s always going to be - nursing home-hospital-nursing home-back again?” I wrote that I didn’t think I could go on coping alone. [Of course a nursing home wasn’t possible; he didn’t know what he was talking about; but I could have done without the further stress his words caused me.]

Mum said, “I’m so scared I’ll never see you again.” She took a lot of reassuring. I suddenly realised, because of her movements, that the “snake” obsession she had developed was to do with the catheter.

17.7.93
She was very afraid. She said, “I’m dying - help me”. God, how I was trying to! Was she asking me to help her to die? I couldn’t do any more about that than I already had.

18.7.93
Now Mum had become incontinent of faeces. She would have been so distressed if she’d been “herself”. She looked much worse and was trembling. All I could think was, “Why doesn’t it end?”

19.7.93
Just sad and confused.

20.7.93
It occurred to me that I’d had no time to watch Mum become a little old lady. It had just happened, literally overnight. She said, “Save me”. She had such faith in me - she thought I could do anything.

21.7.93
The psychiatrist had reported that he thought it was primarily a psychiatric illness. I was flabbergasted. There was blood in the urine again and you only had to look at Mum to know that there was something dreadfully, organically wrong. I had a feeling that the consultant would have withdrawn treatment if he could have been sure that that’s what Mum would have wanted.

23.7.93

I wrote, “Where is Mum? I haven’t seen her for so long.”

24.7.93
They made Mum sit up. She looked terrible. She said, “I don’t want to live like this.” So if I had any doubt about the instructions I’d given, it was dispelled now.

25.7.93
Blood in the urine again. Mum’s skin was turning grey in places. She said, “I don’t think I’m going to make it for you this time”.

27.7.93
Mum was very drowsy and had had a fit during the night. They thought death was imminent.

28.7.93 - 31.7.93
Mum was still very drowsy and having fits all the time. I was terrified.

1.8.93
Mum had deteriorated again overnight. I gave in and called the chaplain. I’d have called anyone who might have been able to give her some comfort!

2.8.93
Another fit was noted during the morning. Mum’s breathing was poor and the nurses were very uneasy. I wondered if this was it? Sue, calm, instinctive , experienced nurse that she is, thought not yet. She told me that when the end really was imminent,there would be a change that would be unmistakeable even to a non-medical person.

3.8.93
The drip was in again. A doctor from the psychogeriatric hospital came and told me that some strokes do not show on scans. That was the nearest to the truth that anyone got, as it turned out. The nice nurse from the George Thomas Hospice Organisation came, realised the horror of the situation and promised that they would do everything they could. They had one of their palliative care specialists beside Mum within minutes. [I had contacted this organisation because I was worried about Mum maybe dying in pain. Also, as she couldn’t communicate properly, it was often impossible to know whether she was in physical pain or not. This organisation primarily helps cancer patients and their families but they were incredibly supportive to Mum and me. The work that they do is truly wonderful. ]

4.8.93
Mum’s breathing was very shallow and the nurses were worried. The only thing she said was, “I’m worried about what I’ll be called.” [I didn’t know what she meant.]

5.8.93
Again Mum mentioned something about not having a name. I never did work it out. The George Thomas lady came again with a colleague and they were very kind. I managed to recite Shakespeare sonnets XX1X and CXV1 to Mum.

6.8.93
Mum’s lips were white and her eyes had gone all puffy. I finally cracked and went down to the chapel. I said, [in full pedagogic mode], “Now listen up if you’re there. I don’t know how to talk to you but it’s about time you helped. Her name is Violet Rosamund Eggleton and she has never harmed anybody, so just you remember that.” - Not much of a prayer, was it? But it was the best I could do! I think I stayed there a bit and cried.

7.8.93 - 11.8.93
These were just terrible days with Mum in a deep sleep. I wrote that I was very frightened.

12.8.93
Mum was less sleepy. Her colour was awful. The registrar said a psychiatrist would be taking over. I said I wouldn’t allow it. He then admitted that the condition was life-threatening but that he still didn’t know what it was.

13.8.93
They moved Mum into a four-bedder because a woman who had had a miscarriage needed the cubicle. I got very upset because the privacy had been taken away.

14.8.93
I was no good to Mum as I couldn’t stop crying. I left at about 1700.

15.8.93
I was shocked by Mum’s appearance when I got there today. They moved her back into the cubicle. [If they hadn’t I think I might have lashed out at someone physically - I was so bloody tired.]

16.8.93 - 17.8.93
Mum was just staring into space. They later said that this was one long fit.

18.8.93
I began to think I was losing it. I kept thinking I saw Dad at the end of the bed and I was saying, “Do something.”

19.8.93
This was the day they were discussing transfer to the psychogeriatric hospital. I’d told them not to mention it to Mum, as she knew what being sent there implied. Next thing I know, a registrar from there comes blustering in, says where she’s from to Mum and starts talking about taking her there! God, I nearly went for her! [I did get an apology later but why do they have to be so bloody careless?]

21.8.93
Mum’s mouth was by now a mass of sores. All anyone could do was administer water via those swab things. It was dreadful. She said she had pain in her head.

22.8.93
Sundays did not seem to be our day, somehow. Mum was curled up foetally and at one point seemed to just deteriorate before my eyes. She seemed to shrink for a few seconds. I don’t know what I saw to this day - maybe a change in the aura? - but I called the sister and she said that there had, indeed been a change in those few minutes. She thought the end was close but that I should go home and ring at 2200, which I did. There was no change ; Mum was staring into space again.
2007 note: Some years later, I heard, on a radio 4 programme, someone saying they had seen a sort of “haze” around their adult daughter a few days before she died suddenly. I wrote in to the BBC message board but no one else responded that they had ever seen anything like it.

23.8.99
Mum was terribly sick during the afternoon. They were still going on about the transfer! I couldn’t believe it. This was the day I phoned my MP. The consultant from the psychogeriatric hospital came again. He admitted he was baffled but said he thought he could help. I thought Mum was beyond it.

24.8.93 - 26.8.93
Just terrribly drowsy, knowing me but no one else.

27.8.93
Mum’s mouth was again a mass of blisters. Nobody talked about moving her now. We were all just waiting. In the evening she had a fit which she did not come out of.

28.8.93
The ward rang in the morning to say that Mum had deteriorated and I had better get there quickly. When I got there she was in obvious pain so I insisted that they did something about it, as they had promised they would. Sue came in the afternoon and confirmed that this time this was it. She thought we had, maybe, 48 hours or so. The two nurses from the George Thomas Hospice came, too. Mum was in this long fit and never closed her eyes. I stayed that night and the next one. It was horrible.

30.8.93
The bank holiday. I felt terrible. Martha came to the ward at 0830 and drove me somewhere where she thought she could make me have breakfast - Safeway’s, I think. I went back in the afternoon and was physically sick - not because I was squeamish but because I was frightened. The nurses said I looked ghastly and they and Sue persuaded me to go home. I think they knew I’d need my strength the next day. Strangely enough, I actually slept that night.

31.8.93
Sue came to the Heath with me in the morning. Mum was that terrible colour again and seemed to be in pain. I went bananas about it and the sister arranged a morphine pump.. We left at around 1530 and Mum’s friend Margaret came and sat with her in the meantime. I came home and took my dog out and just as we got back the phone was ringing. The sister said Mum was a lot worse and I had better go back. [Dr S had warned me that I might have some physical reaction and my legs gave way for a moment.] I coudn’t think who to call: Martha’s car was not in her drive; Katie was home but she and her partner were in the process of splitting up and there was a bit of an “atmosphere” next door. So I called poor Sue again. She said she would get us a taxi and so I walked around to meet her, knowing I was going to a death. Sue held my hand all the way to the Heath and the taxi driver was considerate. We got there at about 1830. It was such a shock, seeing Mum in that last struggle - worse than with Dad all those years ago. Her eyes were glazed and her breathing was very difficult. She calmed a bit once I held her in my arms and I couldn’t even cry because I didn’t want her to know what was happening to her. [She was probably too far gone anyway, but there is no way of telling.] All those months and now it was so quick! The breathing changed several times and at one point Sue said to her , “Let go, Vi”. Then three gulps which I shall never forget - I just had time to say to Sue, “Oh god, what’s that?” but I knew. And then it was over. It was precisely 19.36.. I’ll always be grateful to Sue for bring there and guiding me through it.

Well, we went to the day room while the nurses did what they have to do. They were very kind - they made sure the light was soft and they put a rose in Mum’s hand. Then I went back in and somehow recited the two Shakespeare sonnets [see above] and the lines from Quasimodo [so Sicily comes into the tale again].

Then the registrar came and he was more ill at ease than I was. I insisted on a post-mortem. He tried to tell me that even if they did one, it might not be conclusive but I said I would not leave until they promised that they would do it. So he caved in.

Martha arrived and she and Sue somehow propelled me towards the lift and out of the hospital. Back here, Sue called the Head and Joan and I just went for a walk with my dog. Martha asked if I wanted to sleep in her house but I was afraid if I didn’t face up to things that night, then I wouldn’t the next. Then Josie and everyone were ringing..

I coudn’t make any arrangenments for 3 days, and I was actually glad of the respite. On the Thursday I got the call from the coroner’s office and Josie drove me there. The first thing I asked was whether they had established a cause of death and the answer was yes, in fact, three: The death certificate reads: “chronic pyelonephritis; atherosclerosis with vertebral artery thrombosis”. [ Later, when I received the full post-mortem report I read that Mum had had not one, but two, major strokes. Dr. S explained that these would have been in an area of the brain that does not show up on a scan. ] I was so relieved to at last have a diagnosis and to know that it had been organic; to know that I had been right to insist on hospitalisation on that June night; so I burst into tears right there in the coroner’s office. He became quite concerned. Then we went to register the death and Josie got a parking ticket. I went bezerk at the traffic warden, which didn’t help matters.

I made the funeral arrangements and was quite determined that I was going to do the oration, although the undertaker advised against it. I think he thought I’d cry. I decided I’d just pretend it was a school assembly and so I got through it. I think I was beyond tears anyway. I also think that you are lent a superhuman strength at these times. The undertaker apparently said to Martha, “That’s some woman.”

The next ordeal was clearing the flat, which was much worse than the funeral. I kept finding things like my Dad’s love letters, which I still have. And the vultures were out, all right! One neighbour asked if she could have a lamp before I’d even got through the main entrance door! Martha helped me sort things; another friend came to take stuff to the charity shop; and 2 colleagues borrowed the school minibus so that we could move furniture. [They had the Head’s permission but you can imagine it went down a treat with Joan!]

Joan actually left me alone for a few days. I saw my own doctor - I was physically and mentally exhausted – and he decided I needed a couple of weeks just to myself. I was still likely to burst into tears in a classroom . So he signed me off again.

Then Joan’s threatening calls resumed. She upset me very badly one day and Dr S, trying to help, wrote to her explaining how traumatic the whole experience had been. This was playing right into her hands. One day - it was just before I was going to go back - I got a call from a teaching union to which I didn’t even belong warning me that I was going to be suspended from duty. I totally freaked, as I’d only heard of teachers being suspended as a disciplinary procedure if they hit someone or something. It was by now evening and I again didn’t know who to call: Josie and other colleagues to whom I was close might have inadvertently made matters worse by marching into Joan; Martha and Sue were both away; and my own union officer, John, was at a conference. Finally I called his wife, whom I knew, and she managed to locate him. John called me at 2300 saying it was ridiculous and he would sort it out the next morning. I didn’t exactly have a pleasant night. The next morning he called and said we had to go down to the education offices in the afternoon. He also said that the administrators had received a copy of Dr S’s letter [they could only have received it so quickly by fax] and that they were interpreting it as evidence that I had gone nuts. John had said “Well, what do you think she’s going to do, then?” and they had said, “We’re afraid she might end up being a screaming wreck” . Now those had been my very words to Joan at the beginning! I was so shocked and upset; I couldn’t believe that, after all I’d been through, I was now faced with this! I was shaking by the afternoon but on John’s advice I power dressed and we went down to the education offices. They’d lumbered an education officer whose son I had taught with the job and he seemed most embarrassed. But John must have made a few calls earlier because now they had completely backed down and the officer explained that there had been no question of a disciplinary procedure at all; all this was about was that there was a new procedure whereby if you were absent for more than a certain number of weeks with stress, you are given what is called a “medical suspension” pending a further doctor’s report and that’s all. There was no question of loss of salary or anything else. The officer then apologised for any worry they had caused me - they weren’t going to go through with it in any case.

Hmmm… Well, I marched into school the next day [ a Friday] and announced I’d be back on the Monday. I should have got an Oscar for the cool act I put on: “Oh, it’s fine, Joan. I know they were only following procedure and I don’t have a problem with it.”


So I went back for another 2 years. It was difficult getting some of my classes “back” onside but I did it. Joan and I re-established a cordial working relationship but I never got over the way I was treated during the worst time of my life and later when I was grieving.

John Arlott put it best: you are, when such things happen to you, “reduced” in a way, he wrote after the death of his son. You are are never quite the self that you were again and some of your resilience is lost. 2 years later I had a nervous breakdown and left secondary teaching. Yet, if I had not, I don’t think I’d even be alive today, such was the pressure at work. I’d certainly have been more financially secure if I’d been able to carry on with a job I had previously loved and I do think about that now that I am approaching “normal” pensionable age. But then I wouldn’t have found the friendship, understanding and love that I have in Sicily and I wouldn’t have been sitting writing this in Browning’s “land of lands”.

MUM - 3

For those of you who can bear it, this is the continuing story of my mother's last illness and the way it all connects to my life in Sicily now.

This is pieced together from my diary:

9.6.93
I did not get home till around 0800. After I called school I called the hospital again. They said that Mum was even more confused and they did not know the cause. I went there in the afternoon, spoke to the doctors, who were at a total loss to explain what was happening, then saw Mum. She was still talking about all this money she thought she had won.

10.6.93
Mum was in bed. She was hallucinating and kept talking about the sixty cars she was going to buy. She was aggressive and demanding with me and the staff.

11.6.93
She was sitting in the chair, wearing the pretty dress and was still confused. But she had stopped talking about the money.

Weekend:
She was sitting in the chair. She was confused but could chat. She was much quieter. She’d put her hair up and her skin was clear. She looked almost young.

14.6.93
Sue, my nursing tutor friend, came to the hospital with me. Mum had tried to get up that morning but could not walk. She was very nostalgic and kept crying about Dad and telling Sue about the time I took her to Italy. There was some confusion but her long-term memory seemed OK. I actually dared to hope that day. I saw the registrar, who told me that they still had no idea what was wrong.

15.6.93
This day was a terrible shock. Mum’s complexion was a reddish-yellow colour [which I was to see again early on the day of her death]. She was very cantankerous with me. Sue had gone over to see Mum earlier in the day and was worried by her colour. When I passed Sue’s house on the way home, she called me in and gently told me that, in her opinion, Mum wasn’t going to recover. “I don’t think she’s going to ‘do’, love” were her words. I cried all that night.

16.6.93
A Wednesday. The first shock was that they had moved Mum to a side-ward, on her own. Her cantankerousness and ranting had begun to upset the other patients. By the time I got there, she was sitting in the chair, wearing the pretty dress. She didn’t even recognise me or acknowledge my presence. There was a bit of birdshit on the outside of the window and all she would do was try to scratch at it. She looked about 90. A nurse had told Sue that she’d been shocked by Mum’s appearance when she came back on duty. Apparently Sue had said, “What do you think it was like for her daughter?”

17.6.93
This was a terrible day. Mum could not speak and it seemed that her sight was affected - she seemed to be focussing on light and then dark areas of the room. I left mid-afternoon to get a few toiletries for Mum from Safeway’s. As I approached the checkout, they closed it and I went bezerk. [They reopened it!] This shows how a little thing can make you snap in such a situation. How on earth could I have coped with 32 aggressive children at a time?! When I got back, Mum was crying and distressed but as she could not tell me why I didn’t know how to help her - that was the worst of it. All I could do was hold her and I didn’t even know if she was aware of me. They performed a lumbar puncture that evening; it took 3 doctors 3 hours to do it because Mum was fighting them. Afterwards she looked at me as if it was my fault , as if I’d let them hurt her. She didn’t look like my mother at all. At some point during that night she had a fit.

18.6.93
They tested for encephalitis. I was praying [yes, praying] that it would be something like this so that they would at least be able to treat it. She could not speak. She did draw me to her twice. It was as if she was saying goodbye. I wrote in my diary, “The pain of it is unimaginable”.

19.6.93
The test was negative. Back to square one. Mum could just about utter “yes” and “no” She was gazing at me with so much love and we actually had a peaceful, loving day, to the extent that I told Sue that if she died that night at least she would have had that lull in the suffering. I had to feed her: the hospital staff thought I liked doing it, that it made me feel involved, but I hated it as I knew how demeaning Mum would have found it had she understood what was going on.

20.6.93
Mum was in much distress and obvious pain. She managed one sentence. It was “I love you”. What it must have cost her to utter those words I’ll never know.

21.6.93
By now I had told the medical team, “I can cope with you telling me bad news; I can cope with you telling me that you don’t know what it is; but I can’t cope with you telling me nothing.” So they were being straight with me and realised that I did actually understand what they were talking about.

Mum had gone into a deep sleep. The senior registrar warned me that she might not come out of it. There was a tremendous lot of blood in her urine.

I came home at 2230 to feed my dog, freshen up and force myself to eat. The phone rang and my heart missed a beat. It was a male colleague who wanted to discuss a power struggle at school. As if I could have cared less! Then my neighbour Katie drove me back to the Heath and stayed with us a while.

22.6.93
This was the first day that I saw Dr S… at the Careline offices. I was explaining to him how I felt “torn” because of work and he said something which has always remained with me: “ In this situation every moment of lucidity is a gift and you cannot afford to miss one.”

The deep sleep lasted until Friday 25.6. That was the day Mum started screaming - long, loud, shrill screams every minute or so. She was shouting about spiders [of which she had never been afraid]. This was one of the days on which they said they thought the condition might be mental. They let the screaming go on until the Sunday night. [They didn’t want to administer drugs because they still didn’t know what they were dealing with.] But they sedated Mum twice on the Sunday. It didn’t work.

That night I wrote in my diary:
“If you’ve never sat at a hospital bedside and watched a loved one die, you don’t know. I’ve done it twice now and it has not become easier with experience. If you have never watched the destruction and disintegration of the personality, you don’t know. If you’ve never dreaded walking onto a hospital ward, you don’t know. If you’ve never been afraid to answer the phone, you don’t know. If you’ve never called upon an unlistening god to end the suffering, you cannot know. If you’ve never watched a lovely, vibrant woman become a shell, you don’t know. If you’ve never grieved for one still there, you cannot know.”

I also wrote down the words of Salvatore Quasimodo’s poem that I love so much, Ed è subito sera [“And Suddenly it’s Evening”]:

Ognuno sta solo sul cuor della terra

trafitto da un raggio di sole:

ed è subito sera.

Each one of us is alone on the heart of the earth

pierced by a ray of sun:

and suddenly it's evening.

2007 note: I’d known this poem since university but it was not until I came to Sicily that I visited Quasimodo's birthplace, here in Modica. It’s another of the strange ways in which what happened to Mum brought me back to Sicily.

28.6.93
Mum was sleeping. She looked like a young girl. They did an ultrasound scan.

29.6.93
Mum was delirious. She was talking about colours all the time. She was repeating, “In this grey house where I live..” [I guessed that her sight must have been affected again. Nobody knew.] Then she said, “All the colours in the world won’t save me now”. There was still blood in her urine - they did not know why - and she seemed very distressed. A drip was in but she was pulling it out all the time. A kind nurse kept bringing me tea and said to me, “It must be awful for you - it’s not even peaceful.” That started me off - you know how you can be strong until someone sympathises? In the late afternoon Mum suddenly said, “I’m going, I’m going.” - “Where are you going, Mum?” - “I’m going to a place called Syracuse.” - So somewhere in that confused mind she remembered me telling her about Syracuse, in Sicily . That is why I finally said goodbye to her there, in the port, that Christmas, and why, if ever I write a book about all this, the title will be A Place Called Syracuse.

30.6.93
The hospital rang in the morning and asked if I’d like to see the consultant again. So I prepared myself for more bad news. Mum had pulled the drip out again and was moving around in the bed following the direction of the light. Was she grasping at light?

1.7.93
The consultant said that he now thought that it was mental but that certain biochemical changes occur once a person is in hospital, particularly if they are elderly. So I started blaming myself again, wondering if it was my fault for having got her to hospital. He thought a mental recovery was very unlikely. He mentioned the possibility of another hospital [she was much too ill to go into a home]. I understood that he wanted me to tell him what to do should there be a chest infection or other deterioration. I told him calmly that I wanted no futile treatment and he said he very much appreciated this. I was able to do this because, years before, Mum and I had watched a programme about Alzheimer’s and she had asked me to not to let her linger if ever her mind “went”. But even though I knew that I was doing what she would have wanted, I still felt as if someone had opened a hole in my stomach. It was, I thought, the most difficult day of my life.

A kind colleague called Josie arrived at the hospital that evening and she had her 2 toddlers with her. Upon seeing them, Mum started making odd statements about not having had children [I had been adopted] and that upset me a lot. I suppose seeing Josie’s little ones had sparked off a memory of the 9 years during which Mum and Dad had tried for a child in vain. This person who was in the bed was and yet was not my gentle Mum, who had always said she felt as though she had given birth to me. Josie swept me away to her house for a blessed couple of hours of respite. Josie makes anywhere she lives a haven of peace and I sobbed my heart out in her garden.

TO BE CONTINUED

MUM - 2

The story I began to tell of what happened to my Mum and, consequently, to me, during her last illness produced a tremendous response. What astonished me was the number of people who had had similar experiences, particularly regarding the NHS. For this reason and because, strangely, if all this had not happened I don’t think I’d have retired from secondary teaching early or even that I would have ended up in Sicily, I have decided to post, in instalments, about what happened subsequently. I should point out, again, that I wrote this before leaving the UK though obviously I have edited it and changed names.

In this post I must tell you that several battles were going on besides the one Mum was having with the grim reaper:

Throughout the three months of Mum’s hospitalisation, I had several run-ins with the benefits agency and other bodies. Just getting Mum’s pension paid directly to me was a drawn-out bureaucratic process. [ There was still rent to pay on her flat and she had other needs.] She was too ill to sign for it, and not sufficiently “of sound mind” to be able to give me power of attorney. I’ve learnt, now, that people should sort these matters out while they’re well, by means of a “living will”. It saves the relatives a lot of added stress at what is already a heartbreaking time. I was also astounded to find that, once a senior citizen has been in hospital for 6 weeks, their state pension, for which they have paid all their lives, is reduced. The logic is that they are not having to pay for food and so on. I was appalled; the person still has needs! This amounts to charging the elderly for being in hospital and again, someone should fight a campaign about it. I did raise this, along with other issues, with my MP afterwards and he asked some questions in the House. But I didn’t have the energy left to kick up more of a stink. Then there was trouble getting Mum's housing benefit through as well; or they’d send it to Mum’s address instead of here [although I had gone through all the correct procedures; Mum didn’t have a bank account and was obviously unable to cash the cheques; therefore they had to be made out to me] .Every time I had to go and sort one of these muddles out, it was time away from that bedside and I eventually threatened to sue the benefits agency if Mum died while I was waiting there. [That got me some action, all right!] I took this up with my MP too and he got me a written apology out of them.

I used to think that if the benefits system was getting me down , and I am not exactly stupid [despite occasional appearances to the contrary !] and I was not afraid of them, then it must wear down some elderly people: I can understand how they just give up and do not claim their entitlement. It makes me angry still. [In fact, I considered doing a course in citizen advocacy at one point after I left secondary teaching.]

Meanwhile Mum’s bills were piling up and I was trying to cope. I carried stinking nighties home to wash most days: in the end it was quicker and less hassle to buy new ones every couple of days. I was spending money on taxis, too. And my phone bill was astronomical because of all the calls to various agencies. Although it was obvious to me that whatever this illness was, it was terminal, I didn’t think I had the right to clear Mum’s flat while she was still alive. I had to be very careful what I said to the warden and others in the building [it was a flat in a “sheltered” complex for the elderly: this means that the person has their independence but there is a warden there to check that they are all right, morning and evening, and who can be called in an emergency]. They’d have liked the flat cleared and someone else housed in it [understandable, I suppose - they must have a waiting list].

There was also a battle to be fought, on one level, with the hospital. At the time the Community Care Act had just been passed: This means that a hospital can no longer discharge someone who is confused and just hope for the best; there has to be a care plan. The Act is also designed to stop unscrupulous relatives from benefitting from the situation. But at the Heath Hospital, nobody knew what they were supposed to do with someone like Mum. There was no diagnosis until post-mortem and they really did not know whether she was acutely physically ill or whether it was all mental. They used to change their minds about this from day to day. [This would upset me terribly; on the days when they would say they thought it might all be psychological, I started blaming myself, thinking that perhaps if I’d given her the pleasure and stimulus of grandchildren she wouldn’t have gone crazy...] Anyway, if they were going to discharge her, they had no idea where to send her. Several possibilities were discussed and I began to feel I had to keep a step ahead of them: At one point - only a week before she died - they talked about transferring her to a “psychogeriatric” hospital [the very term makes me angry] so I went and checked the place out. The standard of care is, I’m sure, very good but I found it an horrific place. All these “lost”, skeletal old souls were wandering around and the ward stank of urine. Mum, as a bed case, would have been an object of curiosity to them and over my dead body was she going there. That day, when I got back to the Heath, the housewoman said she was going to make arrangements for the transfer. I said, “You do that and in the meantime I’ll call my MP.” [His office were getting used to calls from me!] They got a consultant down to see me fast, then, and, as with most situations, once you get to the person at the top you get sense. He promised me they would do nothing without my permission. There were several incidents like that. [How could I have abandoned Mum and got on with my career, when they might have transferred her at any moment because they needed the bed? - I couldn’t do it.] In the end I wrote to the Director of Social Services; he wrote back and agreed that the implementation of the provisions of the Community Care Act was, indeed, a mess , and that because of what I had told him a proper procedure was being established in what was then South Glamorgan. When Mum’s consultant found out what I had done he actually thanked me; it was a relief to his team to be told what they were supposed to do in such cases. I still think that there is something dreadfully wrong with a society in which, if an elderly person has cancer, there are hospices; but if they are confused and too physically ill for a nursing home, the only possibility [I nearly wrote “option” but it is not an option, there being no alternative] is a psychogeriatric ward such as the one I have described. What happened to dignity?

Now I must tell you what was happening with work and this means I must tell you a little about the school where I was a head of department at the time: It was in a very deprived area and the kids were “difficult”, to say the least. It’s important to say that I wasn’t unhappy there prior to Mum’s illness and that I did have my share of successes and laughter there. But it wasn’t like anywhere else I had taught [and I’d taught in some tough schools, including a boys’ secondary school in London where, even all those years ago, there was a police van in the playground every night]. In this school, at that time, heads of department and heads of year walked around with bleepers in their “frees”: If the bleeper went, you ran to the nearest phone and then to wherever the trouble was. Fights broke out all the time and 15-16 –year-olds, if they didn’t like your instructions, would suddenly decide to lie on the floor and scream, “I ain’t fuckin’ doing it!” I got along with the Head quite well and he was a man who liked to delegate; once he delegated that was it; he never intervened in the matter. He delegated staffing issues to his deputy, whom I shall call Mrs Joan Davies. I got on quite well with her, too, but, she was not a person I felt I could talk to about a personal matter.

Anyway, on 9th June 1993 I called school and explained what had happened. Mrs D wasn’t there but the Head was sympathetic and suggested I take the rest of that week off. [You were allowed 2 days’ “compassionate” leave in any case.] I was in shock, crying all the time and in no fit state to deal with children. It was all I could do not to cry whilst I was actually with Mum and I’d decided that this was important; I didn’t want her to know how ill she was. I had no idea ,then, what the timescale was going to be; I honestly thought they’d diagnose within a few days and arrange the necessary care. I really thought I’d be back at work by the Monday. But things deteriorated and it was like a helter-skelter, as you’ll see when I get back to the chronology. Basically Mum was dying but no one could tell me how long we had or how it was likely to happen; they couldn’t even tell me how the illness would progress from day to day. My school was a long way from the Heath and I didn’t have a car or a mobile phone. [Reading this to edit it in 2007, that seems so strange - a mobile phone would have made such a difference!] How would I have felt if Mum had died when I was on the bus or something? It was bad enough when I was on the bus coming home from the Heath [for you have to go home sometimes]; there used to be an interminable wait at the bus station before the bus continued on to my area, during which I used to be terrified that something had happened with Mum and that the hospital had been unable to reach me. Moreover, at school the phones were not manned during breaks and lunchtimes. At one point Mum screamed for 2 whole days. I just did not feel I could go in and deal with volatile, screaming pupils; I was scared I’d break down or just end up being a screaming wreck myself. I didn’t know what to do so in the end I called my teaching union . The union officer, whom I knew pretty well, thought that the risks of a message going astray at school or of my bursting into tears in front of a class were too great and he advised that I take sick leave. This was not an easy decision: I was still very much a career woman and the work of an HOD at the end of the summer term is considerable . Having said that, at least the exams were over and marked. So I went to see my own doctor and he immediately said that there was no way I could cope with my kind of job and the situation with Mum. He was protective and would have gladly signed me off with some vague physical cause [and I should have let him] but I wanted to be honest and so he put “stress”. I should also point out that I didn’t have a brother, sister or even another relative who could have been with Mum when I couldn’t. And she desperately needed someone with her most of the time, not least because someone had to fight for her. That person could only be me.

Well, Joan started calling at all hours and being quite aggressive. When someone close to you is seriously ill in hospital your heart stops every time the phone rings. What I was dealing with at the hospital was bad enough, but Joan Davies would have me in floods of tears every time she rang. Other staff, friends of mine,would come to the hospital and then try to explain to her what was going on but she kept calling. And I made the fatal mistake of being honest with her[ instead of saying I was ill myself]. Once I asked her to come over to the Heath and see and then she would have understood but she wouldn’t go near illness. Yes, the woman had a management problem with an HOD being off, but if I’d been run over or taken ill they’d have had to cope, just as they’d have had to cope if I’d had maternity leave! There are just times when all “normal life” has to be put on hold and this was one of them. The calls became more and more frequent and the tone of them was deeply upsetting, even threatening. The union officer wanted to call Joan and tell her, in no uncertain terms, to stop. Perhaps the best method of defence would have been attack with her - I don’t know. But I was thinking that it was nearly end of term and I’d have to go back and work with her so I left it.

When it was all over and I was back in the swing at school, a year 11 pupil called Lucy [whom I first encountered as she was trying to burn the handle off Joan’s office door with a cigarette lighter!] used to hyperventilate and create havoc in my lesson every Tuesday morning. This was all to do with the fact that she had a lesson with Joan next and “I 'ates Mrs Davies”, she would yell. [“So do I”, I wanted to say.] I used to sit her in the storeroom and try to calm her down. One day she went hysterical and told me there was some wood loose on a desk in Mrs Davies’s classroom and she spent every lesson loosening it some more so she could eventually go for Joan’s skull with this plank of wood. “And now I’ve told you and you’re gonna spoil it and tell!” screamed Lucy. “I’ll personally hand you the bloody plank”, thought I. I did spoil it, of course..

2007: What I think all this points to, apart from shortcomings in care for the elderly, is that in the UK there is no provision for extended compassionate leave when you are faced with a situation like this. Yet, as people live longer, more and more of us are going to find ourselves needing it. Usually, when someone develops dementia, it is a long process. When the time does come when the person can no longer be cared for at home, sad though it is, the care home gradually takes over and you, as the relative, slowly learn to accept that. In Mum’s case it was not a long process. She went from being my Mum, with whom I discussed politics and the state of the world every day, to being this person who didn’t know me half the time and whom I didn’t recognise, within a matter of a couple of weeks. There was no time to “come to terms” with it; all I knew was that she needed me and I had to keep a step ahead of those who would have put her “on display” in a ward for patients with a mental illness which she didn’t even have.

The personal irony of what happened is still not lost on me: before all this, I was the archetypal single, career woman. I’d never had any patience with women colleagues who took time off when their children were ill [I don’t mean in the case of serious illness; I mean in the case of their child having a cold or a stomach upset]. I never understood. “You’ve got a job so do it”, I would think. Then I found myself in this position and I could not do mine.

To be continued

MUM

Both Ellee and James have been focussing on care of the elderly, and jmb recently wrote a moving post about Alzheimer's disease. These are subjects close to my heart as you will see, and, as Sicily does come into the story, I thought that today I would tell you what I was faced with when my mother became desperately ill. I do not think that one would encounter such an attitude from a medical professional here and, with the proviso of course that I can only comment on what I have seen or discussed with friends, families do still seem ready to take responsibility for their own elderly folk in Italy. There are many reasons for this, the most important being that it is still a very family-orientated society, but other factors are that fewer women go out to work here than in the UK and so are able to take on the caring and houses here do tend to be more spacious. The casa di cura [care home ] is regarded as the last resort. I have been looking at some figures here. But Italy has an ageing population so it is difficult to predict what the situation will be in a few years' time. The following, which I wrote whilst still in Britain, is the story of a terrible night and the run-up to it:

Mum
The nightmare began the night I got back from the first Italian exchange to Sicily, just before Easter 1993: Mum had come to stay down here for the fortnight in order to look after the dog and the house. I’d been in regular phone contact with her and she seemed fine, even looking up an obscure quote for me at one point. Anyway, that night she burnt some food and it struck me that normally she’d have been quite upset about it but she just didn’t seem bothered. The next day there were other things - little things- that seemed strange to me, too. They were so trivial that only I would have noticed but I was worried enough to ask my neighbours if they’d noticed any change in her behaviour; they all said no. It went on like this for a few days.

Mum was here on the night of 23rd April and she suddenly asked me why all the lights had gone out. It took me a minute to realise that there was something terribly wrong but when I did I immediately dialled 999 and then called Katie [my neighbour who is a nurse]. Mum was talking incoherently and calling for Dad. She said, "He’s only downstairs in the shop." [My Dad had been dead for twenty years and the shop he had was sold in 1959.] The ambulance took us straight to the Heath [Cardiff's main hospital] and they said they thought it was a TIA or mini-stroke. They stabilised her and I left at around 6am. At that time the emergency admissions entrance was just in front of the maternity unit, and, as I left, a woman obviously about to give birth arrived. I remember thinking, "life and death".

They only kept Mum in a couple of days. They confirmed the TIA diagnosis and when I asked the registrar if it was likely to happen again, he said it was unlikely provided she took an aspirin every day. I believed him because I wanted to.

Mum went back home and seemed OK at first. One Friday I got there from work and thought her eyes looked a bit strange. I had an appointment to see her GP , up the road, as I wanted to ask him some questions. When I told him my concerns, he drove straight down to Mum's with me and examined her. He couldn’t find any abnormalities.

I began to keep a diary - it was just instinct. I had a feeling I would need to go through all these incidents with someone in authority one day. Things were getting more and more bizarre, you see [and dangerous; one day I arrived at Mum's to find no sign of her but three badly burnt saucepans on the hob].

On the morning of 22nd May, a Saturday, I got there, let myself in and there was, again, no sign of Mum. [She knew I was coming.] No one had seen her leave the building and she hadn’t left me a note. This was so unlike her - she knew I would worry. I spent a frantic couple of hours phoning round: I called Katie , to check she hadn’t turned up here; called friends; considered calling the hospitals; I was afraid to go and look for her in case she turned up or in case there had been an accident and someone called her home. [This was not the era of mobile phones.] Besides, I didn’t know where to start. Mum eventually turned up, calm as anything, saying she’d gone up the road to buy a bottle of gin for me. I went bezerk at her.

I was so ignorant of the effects of stroke at the time. I knew about partial paralysis and dysphasia but I knew nothing about stroke-related dementia. I just couldn’t understand what was happening.

Well, I was trying to do my job and keep checking on Mum. There were so many strange things happening with her ; it was like everything I’d ever read about Alzheimer’s except for one thing - this was all so quick.

One day she came down here and left the front door open. I had a go at her, telling her that the dog would get out. She said, "No, he can’t" and I just couldn’t make her see that he could get through that door! Then there was some sort of incident in the corner shop ; she accused them of shortchanging her and came back with a load of figures written down which were meaningless.

Then she started arriving here at odd times in taxis [which she didn’t have the money to pay for]. I’d pay them and try to reason with her; I didn’t realise that you can’t reason with someone suffering from a kind of dementia.

One day we were in Safeway’s and she put five poussins in her trolley! [Neither of us had a freezer at the time.] I just couldn’t reason with her and I got exasperated and shouted at her. Everyone was looking. Why didn’t I just pay for them?

By now I was calling Mum's doctor regularly. I kept telling him I knew there was something wrong. To be fair to him, he’d always respond to my requests that he go and see Mum; he’d ask her some stupid questions, like who was the prime minister, and declare that she was OK. It wasn’t his fault - he just wasn’t catching her at her "odd" moments. I’d also got in touch with the Stroke Association and the South East Wales Alzheimer’s Careline; both were helpful and the latter were wonderful. They took what I was telling them very seriously; one of their medical staff went to see Mum and was as worried by the speed of the deterioration as I was. I knew there was a memory clinic at Cardiff Royal Infirmary and I’d asked her doctor to refer Mum, which he agreed to do, but the Careline people bypassed the usual procedure and got us an emergency appointment, for 9th June.

Now we come to the incident of the ring, the sapphire and diamond one that I always wear. I was here doing schoolwork on 3rd June [it was half -term] and thinking , I admit, how lovely it was to have a day’s peace when my friend and neighbour Martha rang and said , "Your mother’s just arrived here in a taxi." I admit my first reaction was one of anger - "Shit, can’t I have a day without this?" , then I went up to Martha’s and paid the taxi off. Mum was sitting there looking flushed and excited. Then she presented me with the ring: "I want you to have something to remember me by, darling." It was heartbreaking. She’d spent her whole pension on it - Mum, who had always been so careful! [I’d discovered,by the way, that she hadn’t been paying her rent in the previous weeks - out of character again.] Anyway, she was so pleased she’d got me this ring; apparently she’d got the taxi from home, not from town, and made the driver wait outside Samuel’s while she got it! So I thanked her and hugged her, put it on and told her I would always wear it, which I do. Then Mum came up here to see the dog - it was the last time she set foot in this house - and said she was off to meet her friend Margaret. [I later found out that Mum didn’t turn up.]

I think that the taxi rides - which were always to me - were bizarre cries for help. I also think that she was feeling too physically ill to walk very far, but she wouldn’t admit it.

That weekend she seemed calmer but on the Monday she went in to M&S with Margaret and bought herself a pretty dress on the spur of the moment. [She still hadn’t paid any rent and I could not reason with her.] Did she know she was dying and decide she was bloody well having things? Did she always secretly want to be extravagant like Dad? Or was it all just part of this seemingly manic phase? I don’t know.

On the evening of Tuesday 8th June I went to the flat: Mum was wearing the pretty dress ; I can see her now, so pleased with herself in it! I was trying to sort out the rent book, about which she was totally unconcerned. I left her at about 20.00. I was worried but we had the memory clinic appointment the next morning [I’d arranged time off to go with her] and I kept telling myself, "Someone will realise tomorrow; someone will help us."

At midnight the phone went. It was Mum, saying that she had suddenly become a rich woman and I was to come to the flat immediately. I tried to calm her, saying that it was midnight, we had an appointment in the morning, etc., but she became very demanding. [Now Mum had never been demanding; if anything, she was much too gentle, so this really did frighten me.] I called Martha and, kind lady that she is, she drove me to Mum's.

What happened next is imprinted upon my memory, but if it wasn’t I have documents to refer to for I wrote it all down later in a formal complaint.

The sight that greeted us when we got to Mum's was distressing beyond belief: For the first time in twenty years, I was actually glad that Dad was dead; I wouldn’t have wanted him to see this [or any of what happened in the ensuing weeks and months]: Mum was flushed and kept dialling and redialling my number. I was saying, "But I’m here, Mum." She kept saying, "But I’m rich and I’ve got to tell Pat - why doesn’t she answer?" - "Because I’m here, Mum"... I went out to the hall phone and dialled 999. I couldn’t think what else to do.At one point Mum did drop the phone for long enough to go and knock up the warden: "I’m rich; I’m rich and I’ve got to tell you!" [Funny that it all related to money, isn’t it?] I almost had to physically restrain her from waking up other neighbours. In Mum’s hand was one of those stupid "You may already have won" letters; to this day, I think there is a campaign to be fought in making companies more careful about where they send these. [The next morning I found another lot of senseless pencilled figures in the kitchen.] Then the dialling and redialling began again. [Have you ever had that "This can’t be happening" sensation?]

The ambulancemen came: They took one look at Mum and said that they thought it would be better to call out the GP, as the GP could get her admitted straight to the right sort of ward. [I think they thought that she was a case for the psychiatric hospital and that they were trying to save us from having to go through casualty.] The ambulancemen called the surgery locum service on their radio.

Between 01.30-02.00 a doctor arrived. He was obviously not pleased to have been called out! Before he entered the flat, I tried to explain to him what had been happening but he physically pushed me aside. I did say that my mother had been acting strangely for a few weeks but that what was happening now was utterly incomprehensible; I said that I thought she needed to go to hospital to be thoroughly checked over. He said, " She can only go to hospital if it’s an emergency". I said it was an emergency! He entered the room, looked at Mum, and said, in front of her [she was still dialling], "Of course, all you can do with these Alzheimer’s people is give them a tranquilising shot." [Now, whatever was in Mum’s confused mind at that time, she knew what Alzheimer’s was; how could he say that in front of her? - He hadn’t even bothered to examine her.] I couldn’t believe that this was happening on top of everything else: Here was my mother, "going mad" as it seemed, before my eyes, and this guy wanted to give her a valium?! [Looking back, it would have made more sense if he’d offered it to me!]

Anyway, I managed to say that I didn’t think that that would be sufficient and that I didn’t think that a non-medical person could handle the situation overnight. To this, he said, "Why haven’t you told your GP?" [!!!!] Then, because I was refusing to let him administer the valium, he said, "You called a doctor, didn’t you?" I replied, "Yes, and god help me, I got you!" [Mum was still dialling and dialling, saying "I’ve got to tell Pat."] I was at the end of my tether by now, so I wrenched the phone from Mum and redialled 999. The ambulance controller said Mum couldn’t go to hospital without the locum’s permission. So I then decided I’d scream at the doctor till he gave in , which he did. I put him onto the controller and he said, "Oh, you know what she’s like - shouting and screaming." I said, "I’m shouting and screaming to get you to do something!" The locum then wrote the casualty referral and left, passing a remark about me to Martha on the way. Mum started dialling again.

I opened the casualty referral; it gave a few cursory details about Mum - he never did examine her - and it also said "situation combined with the daughter shouting and screaming." This could have prejudiced casualty’s willingness to communicate with me, but did not.

The same ambulancemen came back; they were very kind. They sent me out of the room so that they could get the phone off Mum. It was now so distressing that they advised me not to get into the ambulance; Martha and I followed in her car.

Once we got to CRI and, from there, the Heath, the attitude of the medical staff was completely different: they realised that this was extremely serious and were kind with me. At the Heath they admitted Mum to an acute ward straightaway. They said that they didn’t know what it was, but they felt that it was something physical, not mental. The receiving doctor at the Heath was on the team that looked after Mum, and that helped a lot during the weeks to come.

I talked to a nursing tutor friend the next day, and she said that there was nothing else I could have done that night. When I spoke to the Careline people, they said that it is very common, in cases where the elderly, possibly mentally ill are involved, for call-out doctors to be dismissive. So I thought, that had been me that night, and I’d been prepared to fight for Mum. What if it had been some old dear who wouldn’t have stood up to the doctor? What would have happened then? So I made my mind up to have a battle. I lost it, but I think I managed to highlight some issues and hopefully make some people more careful in their dealings in such cases. I have to say that the medical care that Mum received once admitted to hospital was superb. But no one should have to go through what Mum and I did on the night of 8th - 9th June 1993.

Three months later Mum died in my arms. Not until the post-mortem was it established that she had suffered a massive stroke that night in an area of the brain that did not show up in any scan available at the time.

And even fourteen years later and many miles away, on the island of Sicily, sometimes when there is a dawn Scirocco and I cannot sleep, I go over and over the events of that night in my mind...