Sunday, May 13, 2007

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.]

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.”

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.

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.”

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?

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.

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.

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.

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.

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.]

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.

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.

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?”

Just sad and confused.

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.

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.


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

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.

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”.

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.

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!

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.

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. ]

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.]

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.

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.

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.

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.

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

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.

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.”

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?]

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.

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.

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.

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.

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.

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.

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”.


Anonymous said...

I have a distant story about the death of my mother, and one closer about the death of my Mother-in-Law. But neither is as painful and concerned as the death of your mother (though adopted). Damn, I don't want to live with the past, it is painful, but not helpful for what we must do now.

Eurodog said...

All I can say is that I hope you have found inner piece where you are now after the horrible death of your mother and your difficult time at school.

Eurodog said...

Oops, I mean inner peace of course.

Liz Hinds said...

The time span involved is the really hard thing. Seeing the suffering and being able to do nothing. Why does God allow this? I have no idea. I am so glad that you have found your Sicilian peace.

Anne in Oxfordshire said...

WL It is such a heart moving story. I will admit that I didn;t manage to read it was quite upsetting for me but nothing like it is for you. So pleased that you have found happiness in Sicily. x

elleeseymour said...

I'm glad you have escaped that horridness and hope that Sicily is much more peaceful and enjoyable. I'm so sorry to hear about you had to suffer this torment on top of losing your mother.

S B said...

I have just read all four of your articles and they have moved me terribly. The suffering that both you and your mother went through is awful. In my hitherto short life (18 years) I have not yet seen this amount of suffering. My great-grandmother died after a series of strokes a couple of years back, but I never really saw her at her worst. I am therefore unable to fully relate with your experience but it moved me nonetheless. I cannot imagine anything worse than not recognising your loved ones before you, and the recognition not being returned.

I have long been a supporter of the Alzheimer's Society, and a few times on my blog I have raised issues of care for the elderly. Every now and again, we hear tragic stories as to the elderly being neglected and treated in a terrible way by the government and care homes. Recollections such as this should bring the issue to the forefront.

I thank you so much for sharing this story with us. I rarely weep at words alone (with Shakespeare being a great exception) but you moved me to tears as I read this. Thank you.

Lee said...

It's so sad that you had to go through all of that distress, Welsh, compounded by not having understanding folk around you. That is what really hurts...and if you're like me at all...angry.

To be treated so inhumanly by your colleagues is beyond description. What people don't realise is one day they will be in similar situations. What goes 'round, comes 'round. Every dog gets its day, the saying goes...sometimes it may take a while, but it happens.

Ruthie said...

Oh Welshcakes... this is so heartbreaking.

The more I read about Joan the more I dislike her.

Maria said...

Your a kindred spirit Welshcakes. Though I do not know what it's like to watch my Mother take ill, I know all to well what it is like to have her taken away all the same.

I wish you love lots of it and peace. Your a wonderful daughter and I am sure you parents and especially your Mom knew how wonderful.

((((((A HUGE HUG from ME to YOU))))

I am sorry for your loss. I am glad you found the warmth of Sicily and friends to hold you when all we need is our mom.


Welshcakes Limoncello said...

Hi, Steve. I'm sorry you have suffered in this way too. My mother was my mother - I knew no other - so for me the adoption issue doesn't come into it. I sort of agree about the past - we have to look forward - but it makes us what and who we are.
Eurodog, thank you. Liz, thank you, too. Yes, feeling so helpless was the worst of it and of course, I railed against god. I'm sorry it upset you, Anne. Thank you for reading as far as you did. I appreciate your kind thoughts. Thank you, Ellee. I do feel at peace here and I also feel my Mum is with me. Steven, thank you so much for your kind comment: there is no reason why you should have witnessed such suffering so young so I am very impressed at your compassion and understanding. I am also so glad that you support the Alzheimer's Society and raise these issues on your blog. People need to know how the elderly are sometimes ignored or at least come very low down on the priorities list. If what I have written can help raise awareness, too, then it will have been worth it. I am sorry about your great grandmother. I am sure she was very proud of you.
Thank you, Lee. Yes, "what goes round comes round" in some way. It is important to point out that some of my colleagues were very kind at that time; but they weren't the ones in authority! I think some people just like to "kick people when they are down". - If you're in trouble, there is always some bastard who'll make it worse - but many more wonderful people who will help.
Thank you, Ruthie. She just had no understanding or compassion. Really people like that are the losers in this life.
Hi, M. I appreciate the hug - I needed it. Yes, I remember that you lost your mother and how it hurt - and hurts - you. A hug from Simi and me, too. We all need our mothers, however old we are. Take care.

jmb said...

Well WCLC, I didn't think that it could get worse for you both, but of course it did.
What a terrible experience for you and your beloved mother. I think it makes it worse when you can't do anything to help but I'm sure that she knew you were there for her through it all.
I hope it hasn't been too traumatic for you to retell it all for us. I'm glad that some people were helpful for you, especially Sue was an absolute gem. It doesn't make up for the others but it does show that not everyone is so heartless.
Take care of yourself and Miss Simi, your brave little fellow adventurer.

Welshcakes Limoncello said...

Hello, jmb. Thank you for taking the trouble to read everything and thank you for the kind words. Yes, feeling helpless was the worst part. Sue was an absolute brick, as were many other friends at that time. I try to remember that, now. Retelling it has been a release in a way. Yes, Simi and I look after each other. auguri.


View My Stats