Week Twenty-Eight

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

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

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

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

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

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

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

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

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

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

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

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

***

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

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

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

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

***

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

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

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

***

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

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

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

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

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

***

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

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

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

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

I was very proud of them both.

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

A Boxing day photo from long ago – about 1978

Week Twenty-Six

Mammy’s cheeky smile and my beautiful sister

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

***

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

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

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

***

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

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

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

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

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

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

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

‘Lord give me strength.’ I screamed inside.

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

“Why are you still there?” she moaned.

“I’ll be back!” I said and went home.

***

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

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

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

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

“I’m scared!” she confided.

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

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

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

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

***

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

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

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

***

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

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

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

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

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

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

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

***

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

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

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

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

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

Week Twenty-Five

A very young Avril with baby Julia

We’ve just come back from our weekend away. I have really missed Mammy and look forward to seeing her later. Seeing others with their mums makes all this seem so much more tragic and makes me feel protective of her.

I couldn’t find her at first. Nor any staff. Then I heard someone saying, ‘Your daughter is here, Avril’. So I retraced my steps and found her lurking in the shadows of a doorway.

“Don’t do that!” she began, but with a bit of a smile, “You’re trying to trick me. I thought you’d gone… But you look different… That’s why, isn’t it? Have you seen him?… Well you should… Yes, I thought you had! Is that why you are here? …Me too! I don’t know what it is. Yes, I saw Dawn there with him… She does! You can tell by her face… So why don’t you ask?…No, it doesn’t look good. Did they send for you?… I’m just waiting. I’m scared!… No, I know there isn’t, but they don’t tell you…”

“Mammy, who are you talking to?” I asked, fascinated by this new dimension and eloquence.

“I wasn’t talking to anyone!… Yes, you were, it was her.” she answered herself.

“Who is ‘she’ Mammy?”

“Daddy! Yes, Daddy.”

“Daddy isn’t a ‘she’.” I said, stupidly.

“No, you’re right… He’s not good… Why, what’s the matter. ..A bit of this and that! He’s grumbling… I know, but he’s not good today.”

We sat down in a quiet place and she continued in her ‘Gollum’ style speech;

“I want to go home… Yes, I’m frightened. ..You have to stay, that’s why they called you… Yes I know, but I want to go home. There! Did you see him?… Daddy…”

A lady walked in and came over to the window next to us. Mum glared at her. The lady said, “Do you mind if I close this?” (Curtains)

“Yes, I do mind. Go away!” said Mammy, beginning to rise aggressively towards the woman.

“She’s only trying to close the curtains, Mammy.” I pleaded whilst trying to hold her down. “It’s a good idea, because it’s dark outside now.”

“No, she’s not! They do that, if they can get away with it. And then it’s gone… You know it’s them. There are some horrible people and they take them. I know you don’t believe me. You have to watch them…”

At this moment a man came in, noisily dragging a chair.

“Oy, stop that! Get out!” Mum shouted.

Fortunately this man’s relatives helped him with the chair and Mum grumbled on about how it was him, them, all those others…

“Why do they do that?… Maybe I got it wrong. They will think I’m a loony!… Did you get it?… You did? It came?… And what did it say?… He’s clear? Oh, thank God! Oh, that’s great…” She turned to me again with a look of sheer relief and joy.

“So it came? He’s clear?” I asked, trying to muscle in on this conversation.

“What do you mean?… Oh, I’ve forgotten now.” She added, clearly distracted by my interruption.

“Who are you talking to, Mammy?”

“A man.”

“A man?”

“Don’t say it like that!”

“Sorry Mammy, but I can’t see the man. Who is he?”

“Can I go home now?… No?… Why not?… Do I have to?… I’m scared… He’s all right! I want to go home… Can’t I? What did they say?… Was she there?…”

I became aware of the bell ringing indicating that visiting time was over. I kissed her and said, “I’m going to find a nurse now.”

I got the key and sorted her laundry. Boy, how it ponged! I looked over to her still chuntering, so I left without interrupting her again. Every day is such a different experience. Today she seemed to be two distinctly different people talking to each other and quite unaware of my presence for most of it. One really flew over the cuckoo’s nest in here today.

Chapter 15

My visit to Mum started well today with a big smile, hugs and tears. The nurses said that it was her first smile all day. Apparently she had only consumed one small glass of squash and two biscuits all day, so I got another drink for her and we sat down in the empty dining room. I had spoken yesterday to Debbie and Mum’s friend Wendy, and I told Mum all about it. She was responsive and drank her juice, so I ordered a second one.

“We were coming to see you today,” Mum began, “but we were busy chasing the boys around and doing this and that…Daddy was…but we wanted to come…How are the boys?”

I explained that Josh was in London to see the new Batman movie and that Conor was at home having a saxophone lesson. A few sentences later, she asked after the boys again and I repeated my story.

“No,” she argued, “she’s here!”

“Sorry, I meant that JOSH is in London.”

“No, she’s there!” she emphasised, pointing to a blank wall.

Clearly she was hallucinating and was beginning to get cross with me. Then she was distracted by ‘someone’ under the table. Looking down, she smiled sarcastically and began remonstrating,

“What are you doing there? You should be in bed! Go on. Back to bed now!”

“Who was that?” I asked stupidly.

“Dawn! You know what she’s like!”

Then she addressed me, “Well, what are you waiting for?… Who are you?” A black cloud had come over her again. She hung her head and asked, “Do you want something?”

I said I wanted nothing. That I’d just come to say Hello…

“I said ‘who are you?’ she repeated with agitation.

“I’m Dawn, Mammy.”

“No, you’re not.”

“Who am I then?” I challenged, becoming impatient.

“You ask me? You look like him, but…”

“I’m your daughter, like it or not!” I said, getting up. “I’ve got some laundry to do now.”

I did the laundry, found her again and kissed her goodbye. I’m too tired for this today.

***

Mum’s friend, Wendy had apparently gone to see Mum on Friday afternoon, but Mum hadn’t acknowledged her, so she didn’t stay long. Julia and her daughter went on Sunday and had a similar experience.

I took Conor with me to see Mum today – our last daytime trip before the Autumn term starts. I start my teaching job tomorrow. We are all a bit apprehensive, especially Conor and I – new schools and unknown challenges ahead.

It’s also the end of Mum’s 28 day section tomorrow and I’ve heard nothing about the hospital’s intentions or plans for her.

We took fresh doughnuts with us, hoping to tempt Mum into eating something. It’s good that she is losing some weight, but she does need to eat and drink something. As we arrived, a nurse was reassuring a very distressed Mum. She saw Conor and I and rushed over with tears and grabbed me for a big hug. Conor joined in too and Mum seemed so relieved and happy.

Then the nurse said, “See, Dawn did come!” and Mum stiffened up.

Then Conor added, “It’s nice to see you, Grandma!” (Why he called her ‘Grandma’ and not ‘Nana’, we don’t know)

Mum panicked and pulled herself away from us, stammering, “No. No, you’re not…Go away! You’re lying…No!”

We got nothing else from her. She wouldn’t eat the doughnut, wouldn’t speak to either of us…she had such a look of hatred towards us. Conor was upset again and Mum marched up and down the corridor chuntering to herself and growling whenever she passed us.

A nurse said that Mum had had no medication, food or drinks for 2 days again. Her mouth was dry. The nurse was concerned and said that obviously they wouldn’t be sending Mum out like this. They would need to see her condition stabilised. She said that they wouldn’t give the Lorazepam because Mum was not being ‘physically aggressive’. I argued that she was being verbally aggressive and was pushing everyone away. More importantly, she was in danger of self-harm by not drinking anything and surely they must be able to do something, or she would die. The nurse answered that they would address all this at the review tomorrow. Dawn, you are not a nurse!

***

Well, I am back at work, doing a job-share in a Year 1 class. On my second day, yesterday, I had a missed call from the Social Worker to say that at Mum’s review they had decided on a ‘Section 3’ for a further 6 months at the hospital.

Today, after an exciting day in my new class, I went again to see Mum.

She is oblivious to what is happening and to where she is, it seems. Mum greeted me with the old smile, hugs and tears of relief, or joy, or whatever it is she feels when she recognises something. Immediately she began to talk – fluently – about Avril and Dawn, about how unfair it was that Dawn always got more…

I don’t know who she was talking to. Suddenly, she ‘became aware’ of someone tugging on her trouser leg and became irritated, saying,

“What are you doing here again?.. Who are you?.. Avril!…” Her thoughts were interrupted by some visitors leaving the ward and she turned suspiciously to me.

“Who’s that?” she enquired.

“I’ve no idea!” I replied, still squatting down on the floor, where her eyes were fixed.

“Yes you do! Who is it?” she demanded.

I fumbled an explanation that they may be relatives of people there and that they were visiting, but suddenly another lady, brandishing a ‘zimmer frame’ towards me, emerged from a door beside Mum, only to attack me with,

“Why did you say that? Why did you say you would…”

I backed away swiftly from the frame and Mum pulled away from me saying,

“Why are you here?” addressed to me.

“I came to see you.” I replied feebly.

“No you didn’t. You don’t know me!” she accused.

I began, stupidly, to argue with her, feeling stressed and fed up with these difficult games. I said frustrated things about her not getting rid of me this time and threatening to tell her everything I knew about her and Daddy. She didn’t want that either and I knew that I was being unhelpful and speaking out of frazzled emotions. I fired some memories of names and places at her deaf ears and walked away to sort her laundry. I was shaking and upset when a kind nurse offered me a cuppa, a listening ear and some words of comfort. I calmed myself and found Mum in the same spot in the corridor on my way back. I kissed the back of her head cowardly and she said,

“You leaving now?… Goodbye!”

“How did you know I was going?” I asked incredulously.

“Go on. Get on with it!” she spat.

“Goodbye Mammy.” I sighed.

I never know what to expect when I visit Mum.

Week Twenty-Four

Mammy playing and happy

Today I spoke to the Social Worker and to the manager at Broad Glade. The room is left available for Mum, until a decision can be made, though I sense that their decision is made already. The Social Worker will see me at the review tomorrow.


Monica went to see Mum today. She took with her a whole load of photos to share, but she didn’t stay long. Mum was hiding in the loo and wouldn’t come out, so Monica went in. Mammy didn’t acknowledge Monica, wouldn’t look at the photos, was cantankerous and insisted that the photos all belonged to her. Monica could understand her own mother becoming aggressive with dementia, because, she said, she had always been a horrible lady, but she didn’t expect my mum to go nasty. I suggested that because so many horrible things had happened, that Mum couldn’t control, that maybe all her hidden fear and anger was now expressing itself, free from inhibitions.

Monica also fears that visiting the angry Mum just makes her more distressed, confused and angry. It seems to do no one any good. When she’s relaxed and happy Mum gets so much out of the visits, even if they are immediately forgotten, but the moments must add to her general store of well-being.


It is Tuesday morning and I’m feeling strong and positive. Joshua is baby-sitting Conor and I’m off to ask some questions.
When I arrived at the review, they were still discussing someone else, so I swapped Mum’s clothes – dirty for clean, or vise versa. We nearly made a mistake though – the nurse took me to Mum’s room and opened the wardrobe. I noticed how empty it seemed and started to hang up her clean trousers and tops, when I realised that the clothes in the wardrobe belonged to a man. Eventually we found that Mum has been moved into a women’s ward, sleeping six, and I finally got the laundry sorted.

Mum was lovely and not particularly dopey. I thank God. She was giggling and chatting with herself – asking and answering her own questions, but aware of my presence. She asked me if I’m better now and interrogated me with her eyes when I said I was, as if to check that I wasn’t just pretending. I remember that expression.
“Are you sure you’re OK?.. I’m not out of the woods yet.” She added.
“No? But there’s light ahead and you’re getting better.” I offered.
Mum giggled again. “I’m bored. Can I come home with you? What are you here for?”
“I’ve come to see the doctor.” I was happy to say truthfully.
“Me too.” She added. “I haven’t seen you for so long; I thought you were never coming back.”
I had remembered the tweezers, aware that Mum’s beard was growing furiously. I began to pull the wires out one at a time, trying desperately to distract her from the sensation, but she seemed to feel the pain of the plucking more than ever. I didn’t do much before the nurse called me through.
“My turn”, I announced cheerfully, “See you in a moment.”

The review was a bit formidable. There was the dementia doctor and her shadow, the Social Worker and his shadow, the staff nurse and little me. They tried to reassure me that they were all working to find the best solutions for Mum. I trust that they are. They don’t think that Broad Glade is suitable for Mum any more, but they can’t say what is suitable, ‘at this early stage’.
I asked about the medication and put my case for giving Mum more of the Lorazepam. The doctor was quite adamant that Mum would stay on the Trazodone. She says that there isn’t much else on the market and that Trazodone is very effective. She added that Lorazepam should be used ‘as needed’ when Mum is particularly difficult or violent. She argued that because one can become tolerant of Lorazepam, it should be used sparingly if it is to remain effective.
The staff nurse said that Mum likes to be alone and seems quite content wandering about all day. She said that problems only occur when the staff need to get Mum to do something like wash, eat, get dressed, take her medicine, etc, only then does she become difficult and aggressive.
They then said that there is no way of knowing how Mum would progress with the disease – whether she would get more aggressive or more benign as time passed. They would be looking to place her somewhere where she would not have to be moved again as she deteriorates. I wanted to say that I am looking for a miracle, but tears came instead. It isn’t easy to believe in miracles when folk around are throwing negative, pessimistic circumstance and prognoses at you. It’s quite intimidating. They said they’d involve me in decisions… gave me a tissue, and showed me out.

Mum was still in good form. A man was sharing the two-seater settee with her, with his arm around her waist. I sat in the adjacent chair and tried to talk to her, but the man leaned forward, glared at me and said,
“Go away! I’m warning you, go away!”
“Don’t you start!” I said, feeling both amused and ruffled that he was spoiling my quality time.
Mum looked at him and smiled, chuntering to herself and then kissed him on the shoulder. I sat back and took out some paper to make notes. The man again leaned forward and growled,
“Go away! I mean it. She’s my wife!”
“And she’s my mother,” I retorted, heartbeat quickening. “So who does that make you?”
I laughed at the whole situation and at myself and settled back to look with love.
A nurse came in with a ball and a target. Mum and her new man-friend chose to play. Mum aimed sideways instead of in front and shook her head saying how she’s ‘no good at it’. The man then threw and scored, so Mum had another go with renewed vigour and concentration and scored too. When he had the ball, Mum thought it was still in her hand and was trying to throw nothing.
“I need something a bit heavier,” she complained, looking at her cupped, empty hand.
I noticed that Mum responds to all the conversations around, but doesn’t expect a response herself. So, when the nurse says to someone else, “I’m going to fetch you some tea. Are you warm enough Ivy?”
Mum replies, “That’ll be nice. I think I’m alright…Oh, there you are.”
She seemed to be enjoying this man’s attention and lunchtime was looming, so I made to leave. She asked if I will come back. Of course.


We are going away tomorrow, so I want to see Mum before I go. Conor wants me to phone first in case he can come too. We prayed on the way and found her brimming with tears of joy and hugs for Conor and I. We had the old ‘where have you been?’ and Conor had a smile from ear to ear as he led Nana to a comfy place to sit. Unfortunately, Conor kept opening his mouth and putting his foot straight in it, unwittingly, with concepts that were no longer part of Mum’s reality. I did not fare much better. She kept saying how bored she was, with nothing to do. I reminded her that hospitals can be boring, but you just have to wait until they give you the ‘all clear’.
She didn’t want to hear that she was in hospital.
“Nobody told me.” She complained.
We changed the subject and said, unwisely, how we were going away for the weekend.
“Can I come?” she asked.
“You have to wait for the doctors to finish your assessment, Mammy. They won’t let you leave the hospital until your test results are through.”
“They didn’t tell me. Why? There’s nothing wrong with me!”
It was like treading on eggshells and trying to avoid breakage, so I suggested some music. Conor led Mum to the music room and was a bit confused when Nana insisted that (my) Daddy was there. Fortunately there was no one else in the music room, so we closed the door. There was a Patsy Cline cassette there, so I suggested that. Mum agreed and we danced and sang ourselves silly.
“You look different?” she said after dancing and staring quizzically for some time.
“Do I? Just greyer around the edges, I expect.” I answered, but thinking ‘I feel different – dancing around like this is the best music I’ve ever heard, surrounded by insanity. I feel zany and high myself, but thankful too and sort of content.’
Mum was enjoying the dancing and she looked great. She was much less podgy and was standing up straight and dancing well.
“No, you’re different…It’s Daddy!”
Oh, that makes sense then?

When it was time to leave she was disappointed that she couldn’t come too. It felt like all the fun had been undone and forgotten and only the pain of separation remained for her. It was heart breaking.

Week Twenty-One

My lovely Nana, with Avril and Julia

There was a message left for me this morning from the County Councillor – he got my letter about staffing in Care-Homes this morning and responded immediately. He thanked me for bringing it to his attention and is going to take the matter up with the Strategic Director and ensure that I get a proper response asap.

I phoned Broad Glade to see how Mum was before I went in. Apparently she was compliant this morning. The CPN had been in yesterday (I’m disappointed that I missed her, having asked especially to see her) and she has prescribed a new medication. They were unsure what the new medication is, but I’ll find out later.

I got there just before lunch. She didn’t hug me quite so tight, so was presumably not as distressed. She said she was “All right now!” and seemed settled and happy having lunch. Getting ready to go out, she was in the bathroom, when suddenly she looked up and scowled at her reflection, saying, “Does she always have to come?”

I realised that she was being serious, so I asked, “Do you mean that gorgeous lady in the mirror?”

She grunted, “I don’t like her. She’s always there!”

I had to laugh, but it was so difficult to show her that it was her own reflection that followed her into the bathroom. She understood eventually and laughed with me, but I expect she’ll forget again. Maybe she expects to see a younger, brown-haired lady in the mirror? I know I often get a shock when I happen to see myself in a mirror!

We went off to shake collection boxes at Tesco. She wore a rose hat and we filled our boxes and met a few lovely people. We did a good stretch of walking afterwards and Mum and Conor had the chance to chat and play.

Mum is concerned about her eyesight again. When we got back to Broad Glade, they took her to do her night-stuff and Mum expressed some anxiety about not having much money. I reassured her that she had already paid for it all and then she let us go quite happily.

***

Sometimes I get some very morbid thoughts of life and death, etc. I’m not afraid of death, but of dying; and I anguish for those who live miserable lives because they don’t know the love and peace of God; and I miss people terribly, who have died. I have been having emotionally unsettling dreams about my dad, Pa, Pat, Roger and so many loved ones who have died.

I saw Mum on Monday and we went for a very long walk; taking flowers to Pat and Pa’s graves and enjoying each other’s company. She still seems more settled, but whittled again about needing ‘new eyes’. She even mentioned that she’d like to take up the guitar again, which I’ve not heard her consider for a long time. I agree and go along with it all for now.

I did see some senior staff at Broad Glade, but they all appeared too busy to talk, so I smiled only.

Yesterday I got home to find a message from a new Social Worker, saying that he had ‘been asked to do an assessment update of Avril’s needs, as Broad Glade were having problems providing her care’. I found myself shocked to get such a message from a stranger. Fortunately, he saw fit to inform ‘family’ and to get me involved from the beginning of his ‘new case’. I do not understand why Broad Glade did not tell me. I do understand that they have to be proactive, but they could at least communicate their intentions with me.

I found our new Social Worker’s approach to be professional, supportive but non-committal. Interestingly, he said that he’d gone along to Broad Glade on Monday, but that they were all ‘too busy to see him’, so had left again without meeting Mum or talking with anyone. He said they ‘must have been a bit short-staffed’. Broad Glade had contacted Social Services because, they said, Avril had become ‘verbally and physically aggressive’ and had, at one point, ‘pulled a resident out of her chair’.

When I’d recollected myself, I phoned the unit manager at Broad Glade. I now wanted immediate answers about GP, medication, CPN input and anything else they were considering doing or that I might need to know.

I did get some answers: – Mum is now on Trazodone twice a day and apparently the CPN said that that was ‘all they could do for her’, for now. Mum is also now registered with a GP. The unit manager said that they had contacted Social Services to reassess Mum ‘as backup’, so that they can provide the best care for her. She described Mum as ‘quite threatening, although she hasn’t actually hit anyone’. She also described a situation last night, where they had provided ‘entertainment’ and Mum, although enjoying the music, got distressed in the room, because of the noise volume. They then sat her just outside the door and Mum enjoyed it fully, she said. To me it just shows how a little flexibility and understanding enables Mum to fully participate in something she enjoys. She said that they would involve me when Social Services come in to assess and said I must always go and ask, if I have questions. I think that everyone is doing their best, but that priorities and resources vary.

Trazodone is a serotonin modulator used as a sleep aid and for depression/ anxiety/ schizophrenia.

***

The Social Worker did an assessment of Mum yesterday, but is waiting for the nurse to do an assessment too. He said that Mum was clearly very distressed and that he felt sorry for her. He doesn’t think that Broad Glade is a suitable place for Mum, in that they don’t have the staff, or the time, to give Mum what she needs. His concern is that the sort of environment better suited to Mum’s needs tends to be much more severe in terms of the other residents and their behaviour. It could be quite a scary environment for Mum, if we don’t look carefully.

I had offered to mind Isabelle’s children this morning, but at 10 O’clock, Broad Glade phoned to say that Mammy was very distressed and could I go and calm her down. I was planning to take her out with her sister this afternoon, but…Simon was here and able to fetch her instead. Mammy was in a bad way and cried a lot. What follows are snippets of what she expressed between sobs and tissues. In brackets are some questions or clarifications added by me: –

“Silly, silly man!…He’s gone!…He didn’t have to do that!”

(Do you think he did it on purpose?)

“I know he did!…I’ve said my Goodbyes…He knew he was going…He said so, but I didn’t believe him…He said, ‘I’m going to bed…and he killed himself.”

(How?)

“A knife. I don’t know what sort. Then he threw it away and I couldn’t get it back…Don’t tell the kids will you? …He looked lovely when he went…Don’t tell the boys…Silly, silly man!…He knew that we loved him…I think he was happy…I’d never seen him like that…dying…”

(I thought Daddy died at Jimmy’s house after too much whiskey?)

“Yes, he was there and then he came back…He came in HERE (she was pointing around the table) and he said he was going somewhere…I didn’t know he…YOU STUPID man! …Don’t tell the kids, will you?”

(When did this happen, Mammy?)

“It was round about here…about this time…he said, ‘I’m going now’ and then I found him…Don’t tell the kids…I don’t know what they’ll do…”

(I explained that Josh and Conor, had never met Daddy, that he had died 13 years ago, before Conor was even born. I said that Daddy had never been to this house. Mum frowned for some time, looking very confused.)

“No, he WAS here. I know it sounds silly, but he WAS here.”

I made us all some more tea and came to see her grinning like the proverbial Cheshire cat…

“He’s just come…he’s smiling…he looks lovely…BIG HUG FOR ALL!”

Isabelle collected her children after lunch and Conor took Mum to watch a DVD, whilst we waited for her sister. Today is (their mum’s) Nana’s anniversary – 26 years ago she died. When Julia came, we took some flowers up to the remembrance garden. Julia approves of the remembrance vase. We weren’t there long, then we drove into town to drop her off and I took Mum back to her ‘home’.

She always asks me why I’m going and when I’m coming back. ‘See you soon’, isn’t enough.

***

Today Mum and I came back from the TAB Summer picnic, expecting Debbie any time…

“What are you feeling, Mammy?” I asked, because she was clearly distressed.

“You don’t want to know!” she growled, giving another of her very suspicious, shifty looks.

“I really do want to know what you are feeling, Mammy.”

“Horrible…If you want to know…I want to kill myself…I know it’s wrong, but I can’t go on…I can’t live any more…I’ve felt a long time…I’m sorry. It’s stupid. It’s wrong… I know that I can’t do it though…kill myself…I’m a coward… I’d better clean up. The boys will be coming home…I’m sorry I’m a coward…I can’t.”

“I’m glad you are a coward, Mammy. I don’t want you to kill yourself. Did you think about how you would kill yourself?”

“I can’t even do that!” she sobbed.

“Do you think you should kill yourself because of Daddy?”

“”I can’t though…”

“Good. I’m glad. Do you think Daddy is waiting for you to follow him to death?”

“Probably…” she drifted away…

“If Daddy’s in heaven, I’m convinced he’ll be praying for you to have the grace to live a full life, not to die.”

“I can’t do it. And I don’t want to…I’m sorry…” she reached out for a touch…

“I forgive you, Mammy.”

“Thank you.” she smiled.

I wish I could takeaway her distress and pain.

Eventually Debbie phoned to say that she was visiting a sick relative-in-law and wouldn’t be in till late, so I took Mum home again. As we got near to Broad Glade, she asked, “Where are we going?”

“I’m bringing you home.” I answered. “See you later.”

“Are you going?” she sighed sadly.

“I’ll be back soon and Debbie is coming too. Be good.”

“There’s nothing else.” She added with evident disappointment.

I went home, sad and disappointed that Debbie hadn’t managed to see Mum today. I always feel I have let Mammy down so badly. Still, it was lovely to see Debbie and her son James when they did turn up. They had very good reasons for not being there earlier. They were on a different, but equally important mission with a dying lady. Debbie and James promised to spend the following day with Mum and we were all happy to share the evening together.

Mammy in Stromness, with her beloved Grandchildren – Rachel, James and Olivia.

Tuesday evening we said farewell to Debbie and James, and then it was Conor’s ‘Farewell to Year 6’, an evening of drama, song and tears – lots of them, like a dam bursting and sending a domino wave over the whole line-up of year six children.

Of course Mammy has no idea now that Debbie has been to see her and there’s no point trying to contradict her. In her reality, she is right. She always has been. A strange mixture of the stubborn ‘I’m right and I know it’ and the other ever-present ‘I am useless/I can’t do it/I’ve got it wrong again’. She does speak conflicting messages to herself. I am not dissimilar.

It’s a busy week getting ready for a trip to Germany and then for Faith Camp straight afterwards. So much to look forward to and so many friends to be grateful for. Most importantly, I have asked Isabelle, Julia and Monica to visit Mum and look out for her whilst I am away. I know that Monica will see her as often as she can. I feel much reassured by that.