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”]:
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
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
17 comments:
Extremely difficult, Welshcakes, extremely soul-sapping. On the other hand, best to write it here, best to share it and I don't know anyone who would feel offput by it. It's important what you're doing here, I believe.
Let me use a different post for the Focus though.
I don't mind reading it. I hope you don't mind writing it.
Thank you, James, I appreciate it. Of course, use anything you want for the focus - I am always so pleased to be included. Hope you're OK after your day of "woman comments"! [I think you enjoy it, really!]
Thank you for sharing this. It makes me wonder about my mum who is beginning to get confused. I have booked us a week in Greece together, and she asked me the same questions so many, many times about how much it costs, what time we fly, which airport. Then keeps saying "I cna't do that, cant't do that, impossible for you to drive there,impossible, impossible." That's not a word I recognise. I will give her a special holiday. I hope to take her to visit her birthplace and to the monestries in Mount Athos. I know she will have the most wonderful time.
Dear Welshcakes,
very moving, and intensely touching.
I will be back to read more. Thank you for sharing this with us.
Steve, thank you for reading. The memories still make me cry but sometimes I think that is not a bad thing. Ellee, you will, I know, give your Mum a wonderful time. She is only probably showing concern about you - and, of course, she remembers a time when travel was much more complicated. I hope I have not worried you unduly - I would hate to have done that. Bel, thank you for your kindness.
Great writing welsh. Not sure how I would have handled that :(
Thanks for the get well on my site.
“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.”
Your words above are so profound, descriptive and true, Welsh. I watched my mother, grandmother and brother (in that order) die...and it's not an easy thing to do. I found myself wishing they would "let go"...it's cruel to stand by and watch those you love, who have lived their lives proudly and with dignity have to go through such times...it's cruel to them.
Welshcakes I'm amazed that you had the strength to write in your diary every day during this ordeal.
I'm sure one of the worst things was that there was no diagnosis because, when one is established, a plan of treatment can be devised. If it's something that can't be cured you can start the acceptance process and deal with that. But not knowing just adds enormously to the stress. Maybe the doctors will find something treatable soon, hopes risen only to be dashed again and the reality of it all to be endured in the meantime.
I'm sorry that you and your mother had to go through this terrible ordeal. She wasn't herself and whatever she said or did was as a result of her illness.
I'm glad that you are able to write this and share it with us.
Take care
jmb
I too, was adopted WCL. My adoptive mother was a stroke victim. I have blanked out much of that time. It's good that you are able to offload here.
I really, really think you should write a book.
The more I read about it the more I understand how difficult this was for you. Writing it down is the best thing you can do.
It is always difficult talking about these things, however when you do, you find a wave of support engulfing you and you realise you are not alone; far from it, many people have been in the same position and understand fully the emotional rollercoaster.
Thank you for sharing you diary with us and also thank you for your comments on my blog. I have some plans to increase my vote again next year. One day I will represent my area.
Thank you, LN. Will be over to see how you are shortly. Thank you for the empathy and your kind words, Lee. It must have been so hard for you to watch your brother die, in particular. I know what you mean about wanting the person to "Let go", for their own sake. It is all so cruel and very, very hard. Jmb, you, too, are very kind. Keeping the diary probably kept me sane and also I wanted to have facts and dates right in case I took the matter of the original locum dr further. You are right: the lack of diagnosis was the worst thing of all. Thanks for telling me about yourself, Lizzie. I can understand your needing to blank some of that time out. Take care. Thanks, Ruthie. Maybe one day I will. Thank you too, AA. You are absolutely right: I am amazed to learn, here, how many people have had a similar experience and it does help. I hope that I may be helping others here, too. I'm sure you will increase your vote and represent your area one day. MEanwhile, well done.
If you’ve never called upon an unlistening god to end the suffering, you cannot know.
Ah, God, that's true. Everything you said is true.
Bonnie, I know you understand and I am thinking of you, too.
Hello,
I would like to write to you and I was wondering if you had an e-mail address. I am not sure I can write it in this comment box; it is about my family.
Thanks.
eurodogtraining@gmail.com
Hello, eurodog. Thank you and I have emailed you.
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