Week Twenty-Three

“This is your life” – At Porchester Road

Today as I set off to see Mum at the hospital, I felt a great peace. All shall be well.

I had a chat with the lady in charge, then booked Mum’s belongings in and labelled the CDs and ‘This Is Your life’ book, that I’d taken.

Mum has had food, drinks and medication during these 24 hours and allowed herself to be washed and changed. She is much less angry today. There seem to be a lot of staff around who showed an interest in hearing about Mum and were very accommodating, particularly considering that I was there out of visiting hours. The general environment is much more volatile than Mum is used to, with lots of sudden, dramatic incidents, screams and mini emergencies.

I went nervously into the dining area where Mum was and said, “Hello Mammy”, and went to hug her. I got the old response of tears and hugs, so I took her away to a quieter room, where I could help her with her food and pray with her. We did both successfully. She appears to be hearing many voices and conversing with them all simultaneously. She keeps mentioning having a baby and being too old and she seems to be seeing and hearing Daddy all the time. Sometimes ‘Daddy’ was distressing her and she started giving me shifty looks again, but she would switch from fretting, to giggling, to smiling, to laughing outright and back to panicking again, all in the space of a what outwardly appeared to be a complex monologue.

I found some of the residents a little alarming, but a quiet male resident came to join us after dinner and we put on an Elvis CD. Mum and I danced through the whole album.

Mum intuitively knew when I was about to go and asked would I come again. Of course I will. I feel very positive about all this now, although I’ve no idea what is next.

***

On Sunday evening I went back to Broad Glade, with Conor, to get more of Mum’s things and then went to the hospital. Unfortunately, it was the sad and angry Mum we encountered this time, hissing at us to ‘Go away’ and turning both Conor’s and my legs to jelly again. I didn’t know who to talk to or what to do, so we exchanged clean for dirty clothes and came away. Conor was very disappointed and I felt sorry that I had taken him. I had taken him to reassure him that Nana was happier again, but…

Julia is planning to go and see Mum tomorrow, so I’d better warn her, as I’d told her that Mum was better again. I won’t go tomorrow and I won’t be taking Conor until Mum’s behaviour is more predictable.

***

Julia went anyway and was ‘devastated’ to see how much she’d deteriorated. She described Mum wearing some ‘granny apron’ that was open down the middle. Apparently the conversation went something like:

“Hello Avril. It’s your sister.”

“No, you’re not!”

“I am, I’m your sister, Julia.”

“NO. You’re not!” said with such a look of anger and contempt – it just wasn’t Avril, she said.

Apparently Julia was on her way out again, when Mum called out to her, “Who are you?”

“I’m your sister.”

What’s your name?”

“Julia.”

Mum then sneered at her and Julia turned and left, without looking back. She wished she hadn’t been to see her there. Julia thinks it’s worse for us than it is for Mum; but I don’t think that we can know how it is for Mum. As far as I can see, Mammy is in a very bad way at the moment and she is finding life quite unbearable.

***

I spent about five hours working today – planning for my teaching job in September. I had horrible dreams last night about being in my new class, with uncontrollable children and unsympathetic Teaching Assistants. There is so much happening in my life that I have no control over, so I guess the dreams are not surprising.

The house and garden are a terrible mess. The hot-water immersion doesn’t work and the shower switch has decided to break as well, so Conor and I had to wash in the hand basin this morning. The cooker and the microwave are on the blink too, but we won’t let them get to us.

I really want to speak to a proper doctor at the hospital and get a prognosis for Mammy. I spoke to a nurse who said that it is difficult to discuss these things over the phone and that I should just ask to speak to a qualified nurse when I’m there next. He also suggested that I speak to Mum’s new dementia consultant. I’m not sure why they have swapped consultants. All he could say is that Mum ‘sometimes needs restraining, when she invades the personal space of others’. Also, he explained that it is difficult to get near her to wash her or give her food and medication and that they are having to give her space to observe her.

When Simon returned with the car, I went with Mum’s clean clothes, not knowing how I might find her.

I was met by a friendly nurse, who invited me to a carers’ meeting tomorrow at 2.30pm. I passed the lounge and saw Mum sitting smiling and relaxed on the couch. Great. I sorted out the laundry and came back to sit with her. I could see that she was doped up, but she was quite lucid, ‘chilled out’ and lovely. Several times she asked me if I wanted something to drink or eat. She referred to Dawn a couple of times and then laughed at herself when she realised that Dawn was there. She also said, with a smile, that ‘he’s still up there!’ and I guess she was referring to Daddy ‘upstairs still’, as he often was, at home on Porchester Road. We shared some memories of the cats, the goats and some of the clever things that Dad made over the years.

I then said that I needed to go fetch the boys and she asked if she could come with me, but I replied that they could use her help there and she glanced around and agreed.

I don’t know what it was, but I could have enjoyed a dose of that ‘chilling juice’, too.

***

Last night I felt so incredibly tired, that I could hardly stay awake for the boys’ bedtime and prayers. I couldn’t get up easily this morning either. I was ‘babysitting’ and had errands to do before the ‘carers’ group’ meeting, at 2.30pm. On arrival, I hadn’t a clue where to go, but I saw Mum and went to say hello. She smiled as I came to her and hugged her, but when I called her ‘Mammy’, she stiffened up and said,

“You’re not my Mammy!”

“No, I know,” I laughed, “You’re my Mammy and I’m Dawn!”

Her eyes narrowed and she pulled away again, doing the “No, you’re not…”

“Look at me, Mammy,” I said shrinking myself down, to be face-to-face with her, “Don’t I look like Dawn to you?”

“You look like her, but you’re not!” she insisted.

I made a sarcastic retort and excused myself to find the group before it was all over. The group consisted of 3 professionals, four ‘relatives’ and me. The nurse that I’d met yesterday gave me coffee and looked after me, as I was a bit tearful. The group were mainly coming to terms with Power of Attorney issues, hospital visiting conditions and stuff. The staff spoke about ‘Memory boxes’ and said they were impressed with Mum’s ‘This is your Life’ book. One qualified nurse commented on how useful it had been already for her to connect with Mum.

I really just wanted to know about the ‘What’s next?’ issues and what I need to be doing to support whatever is supposed to be happening. The nurse explained to me that under Section 2 of the Mental Health Act, Mum being sectioned means that she cannot leave the ward for 28 days. It also gives the hospital the right to calm Mum with drugs if necessary. That was what they did yesterday – injected a dose of Lorazepam. I asked why they didn’t give it more often, as she seemed so responsive and happy on it, but apparently it is addictive, which I wouldn’t have thought matters too much at this stage, but it therefore also loses its effectiveness when used often.

It is too soon for them to know what is best for Mum, but they will do the NHS ‘continuing care checklist’ themselves and that will then be sent to Social Services. I asked about Mum’s room at Broad Glade and she suggests that I speak to the Social Worker about this. It was good to speak to the nurse. She said that I must always find someone to speak to before I leave, rather than bottling up questions and issues. I feel a bit less lost now.

***

On Friday night I was at the hospital again. Mum had had another shot of Lorazepam and was ‘chilled out’ on the bed. I found happy ways to keep a conversation going and wished I’d brought Conor with me. I took a photo of her smiling, to show him.

I’ve noticed that she seems to be becoming racist. She told me last week that she can’t stand the staff nurse and today she was negative and unresponsive towards the carer coming in to offer tea and sandwiches – both of these ladies were friendly, gentle and brown-skinned. When the ‘tea-lady’ left, I asked Mum did she want some tea.

“Coffee please. And a sandwich if there is one,” she replied.

So I went out and told the lady that Mum had changed her mind. Mum was huggy and sweet to me and she seemed to remember a lot from early days again today. It’s a shame that she can’t stay like that.

Week Seventeen

The Rock n Roll Dancing Queen

Yesterday Mum’s Gynaecology appointment was for 1.45pm and I had to be back at Conor’s school for a show at 3.30pm, followed by a performance at Joshua’s school at 7.30pm.

I was thinking that the Gynaecology appointment might be a waste of time as the problem came and went about a month ago. The waiting room was packed when we arrived, and filled to overcrowded whilst we waited. Thankfully, she was called first and sent straight for an ultrasound scan. They had to do the scan internally and she didn’t like that at all, but was very patient.

The waiting room by now was standing-room only. Again Mum’s name was called immediately and we were seen by the doctor. The process that followed was lengthy and confusing. The doctor thought that Mum did have a problem, but she was more concerned that the scan had shown her womb lining to be much thicker than it should be. She tried to take a sample of the womb lining with a very long and very sharp looking instrument, but to no avail. After consulting a higher power, she returned to say that it is very important that Mum has this sample taken on 28th March, that it must not be delayed and that she will need a local anaesthetic and will feel very uncomfortable afterwards.

Unfortunately, I am supposed to be in Newcastle that day, but the doctor stressed that this is more important. Mammy was very jolly and compliant, but had no idea what was happening.

Disappointingly, and despite our relative swiftness, we got to the school just after Conor’s show had finished, but he was so pleased to see his Nana and insisted that we brought her back home for a cuppa. It worked out perfectly as I was able to take her home, have dinner and then out on time for a brilliantly staged performance of ‘The Wizard Of Oz’ at Josh’s School. I felt grateful.

I was left feeling very strange about Mum. I suppose the awareness of her mortality and other health problems hadn’t occurred to me. I was looking only at her dementia, as she is so strong physically.

***

We now have a date for the ‘Broad Glade Review’ – her six weeks’ assessment. It is a fortnight today – Wednesday 26th March.

More good news is that the Gynaecology appointment has been rescheduled for Thursday 20th March; so I can still go to Newcastle.

Monday night I had an unpleasant dream – all my family and friends were looking down and shaking their heads at me, as Mum sat depressed in the corner. They were blaming me for Mum’s misery and trying to guilt-trip me into taking Mum out of Broad Glade. But I knew that to bring her back to my house was not the answer and so felt confused and upset in the dream.

I spent the morning sewing in name labels and beginning some spring-cleaning. There is much sorting and reorganising to do, especially in what was Mum’s room. It felt very strange to finally remove the room labels.

I have been pondering something different to do with Mum this week. The forecast is not for pleasant walking weather, so I opt for another trip into town, where there are more diversions and shelter. I picked Mum up after lunch and she was argumentative – about putting shoes on, going to the loo, etc.

We had fun in the lifts in town, looked at some sewing machines and went to ‘Waterstones’s’ irresistibly aromatic coffee shop.

Earlier Mum asked me “How are the boys?” and I was struck by how fully cognisant she seemed, about who I am.

As she laughed and we conversed, I thought how I really do love this lady now.

Later, Mum said “I’ve missed you, Dawn!” – as clear as that. I asked her why and she replied ‘all the things we did’ – and that it ‘seems a long time ago’, although she knew ‘it wasn’t’…

I asked if she liked it where she lives and she affirmed that she did, but…there was a but…

“Should I try to come more often, Mammy?”

“It would be very nice, but you are too busy. I only have me to think about.”

I don’t know what the future holds, but I do know that the past has gone and it is today that matters. I want to make today count for something. If I can add value to her life, show me how.

Chapter 12

Mum’s appointment last week was for the Hysteroscopy (sample of womb lining) under a local anaesthetic, but now they say they will need to give her a general anaesthetic to do it, as it turned out to be far too tricky. So we await appointment number three.

We came back from hospital via Isabelle’s. Mum made a comment about how nice it was to be around ordinary life, because otherwise it’s just her alone. I think she is bored and lonely at Broad Glade, but then she was bored at my house.

Yesterday I took the boys, Mum and Monica out to Newstead Abbey. It was very cold again but Mum appreciated the arrays of daffodils and the entertainment from Conor and Monica.

Monica had picked out lots of photographs. It was good to see them – especially the older ones of my Dad’s family. Granddad looked so old at 43 and my Dad was not even born then.

Monica remarked how neglected Mum appeared. Her hair did look terribly greasy and her white beard has grown long again.

We got back to Broad Glade about 5.30pm and had missed tea, but the lady kindly said she’d get her something; meanwhile Mum was grumbling, unaware of my attention on her. She said it was ‘not a good idea to make a fuss’, that ‘it would only make it worse’, that ‘some people are just not very nice’…

I’m wondering what is going on, or is it all in her head?

***

Mum’s review at Broad Glade this afternoon went well enough. Although they acknowledge that Mum has deteriorated substantially, they do think that they have the resources to care for her. The two senior representatives from Mum’s unit were honest and positive. I was taken aback when one said that she loved Elvis too, that they were of the same era. I looked at her, fit and working and again felt sad for my Mum, so old before her time.

The constant coughing has been bothering them all. Apparently the GP has given Mum a prescription for more steroids, but did so over the phone without even seeing her. I shall take her to the GP next week myself and the staff also want me to insist that she has another X Ray.

Monica said that when she was living in Orkney, in 1995, that Mum had had to go to Aberdeen for a Bronchoscopy, because they were investigating the cough then – that was 13 years ago. Apparently they wondered then whether it was a nervous condition/habit?

Whatever it is, it sounds like she smokes 40 a day, according to the care-workers at Broad Glade. They also said that there had been an incident last week, whereby Mum was found standing facing another resident; she was apparently wringing her hands and saying that she wanted to strangle the lady. They did say that whilst this lady could be extremely irritating, it was totally out of character for Mum to behave like this and that they had to write an incident report.

I felt overwhelmed by it all and looked at my list of dry, academic questions as I tried to engage. I didn’t ask what kind of ‘dementia training’ the staff undergoes, nor about ‘contracts’ and ‘financial agreements/payments/petty-cash’ and asked instead about the activities that are provided and whether Mum joins in with anything.

They talked of coffee mornings, bar evenings, music and reminiscing. They said how they put her CDs on in her room, whilst she gets ready for bed. They said they have a new TV channel that has black and white films every afternoon and spoke of bingo and giant tennis. But I know that Mum doesn’t enjoy TV anymore, that she never liked bingo and, as for tennis…

I know she likes her music, food and lots of attention.

I asked if they keep note of her visitors – there was only one (her sister), who came during the first week. I suppose people think that if Mum is going to forget that she’s had a visitor, it isn’t worth making the effort? Personally I think, as Conor put it to me once, ‘at least she enjoys it at the time!’

I did mention the hair washing. It seems that the ladies do not get their hair washed as part of the daily or weekly wash routine, but only by the hairdresser on a Wednesday, which means they have to pay for it. I emphasised that Mum needs her hair washing more often than that, because it gets greasy and itchy, but that she is not used to having rollers, curlers or a fuss made. I don’t know as she ever went to the hairdressers in her life. It seems that the carers have a problem with this. I’ll have to work out how I can do it for her myself.

Anyway, she apparently became a permanent resident on 16th February 2008, so I now have to inform the DWP, DLA and various others about her new change of address.

After the meeting, the Social Worker and I went in to see my little Mum. The Social Worker will email Debbie with the update and hopefully she will respond.

I took Mum into her room and plucked her beard, which someone must have trimmed this morning. She had also been to the hairdresser and smelled lovely. We danced to some Elvis songs and talked about his life. She is very resentful of Elvis’s manager and has blamed him for everything that ever went wrong for Elvis. I suggested that perhaps fame itself was a challenge and she looked knowingly, with a coquettish grin and said,

“Fame has it’s good side and not so good. I should know.”

“What were you famous for?” I enquired.

“For my dancing… It was wonderful” she reminisced dreamily.

“And the bad side to fame?” I dared

“It’s all over so soon!” she sighed.

She has always loved dancing, but has never been famous as far as I know. I dare say she created a bit of a stir on the dance floor though.

Week Fourteen

This week’s is a little longer, but you won’t get one next Friday, so it’s a chance for some of you to catch up...

Chapter10

It’s now nearly two months later. Christmas has been and gone and yesterday we celebrated the ‘Epiphany’. So much has happened emotionally and events-wise over this interval.

Debbie came for a few days at the beginning of December, but as she was largely concerned with shopping, I didn’t get a break. I did communicate some of my concerns about me coming to the end of my ability to look after Mum at home. She says she will support me in any way she can and does understand that it has been very difficult for me.

We saw Monica briefly, but apart from that we have had few visitors. It is like that now.

On Christmas Eve, Joshua had a burning fever and spent most of the day in bed. After mid-night Mass, Simon was also burning up and the two of them spent the next few days with an appetite only for Paracetamol and water. Most of Christmas dinner went into the freezer.

Joshua, Simon and Mum are all still coughing badly. They had a virus, apparently, but Mum had a chest infection too and is now on her second prescription of antibiotics. Unfortunately Mum’s coughing has caused ‘stress incontinence’, which has given me wet chairs, wet mattress and a whole heap of extra washing to do.

Sitting in the waiting room at the surgery, with the whole family, was a rather comical experience. Other service users were quite clearly avoiding sitting anywhere near us. Mammy was distressed, coughing and wheezing severely. Joshua looked mentally disabled with his ashen face poking out from under his long woolen hat, exploding into coughing fits; the doctor even asked me if he attends ‘regular school’. Simon was looking like a vacant, zany zombie and Conor, wearing gloves and a T-shirt with ‘Heavily Medicated for Your Safety’ printed across the front, was acting the part, twitching and groaning, for fun.

I saw the doctor alone last and, not surprisingly, she recommended anti-depressants for me (which I refused) and prescribed the pill, which Simon had suggested that I now take. I had hoped that we would have a baby, but perhaps I am too old. To take the pill would be to give up hope. I could carry on with the uncertainty, expectation and the disappointment and agony each month? It is another difficult dilemma.

Mum went into respite over New Year and we set off to see the New Year in with Simon’s family.

The prospect of putting Mammy, against her wishes, into a home; the thought of there being no hope of a baby; the house full of sickness; and Simon’s increased anxiety are all pulling me down very low. Lord, give us wisdom.

Today is back to school, but it’s Conor’s turn to be sick, so I’m tied to the house again. At least I went out into the garden for a tidy-up and felt a bit more enthusiasm creeping back into my spirit out there.

***

Tuesday today and finally an hour’s solitude. I managed to have a chat with the garden, but I missed the phone – it was Mum’s dementia doctor and I now feel really agitated because we have waited 6 months for this and I missed it. January 8th was firmly printed on my mind, calendar and diary – but all I had remembered was that Mum’s Befriender was coming this morning and the district nurse this afternoon. She left a message that she would send another appointment, I just hope it won’t be another 6 month wait.

Out in the garden I was delighted to see deep-red wallflowers, emerging pink stocks and little proud fresh-green shoots from last year’s bulbs. I was feeling a sense of awe in the hardiness of Nature. Only the second week in January and the flora is waking up again to dazzle us for another year. The mini-roses are still in bloom and the Sweet William has not stopped flowering since last March.

When I woke Mum she was lying curled up on top of the duvet. Being slow to learn, I asked her why she doesn’t get back under the quilt, after she’s been to the toilet. It was a stupid question that she obviously couldn’t answer and made her feel distressed and grumpy.

I have to dress Mum every morning now. The socks she can usually manage if I present them one at a time. This morning she put the left sock on and then sat looking quizzically from the sock in her hand to the socked foot and to the bare foot, for what seemed like 5 minutes, so I took the sock and put it on for her – to put us both out of our misery.

The inhalers are now used at least twice a day and she still does her happy piggy impression and asks, “What does it do?”

When Mum was last in Broad Glade, they suggested that we request incontinence pads from the NHS, as they are both free and effective. She came home wearing one more like a nappy that day. A nurse bought some pads with her last week and, after filling in copious forms, she left me with a ‘urine chart’, to fill in during the week, and a sample bottle, ready for her next visit. Apparently all is well – the sample was good and the scan to see how well she empties her bladder is fine too. She’s going to keep us supplied with big and small ‘nappies’, so that should really help my washing load. They are all valuable improvements and a blessing.

Yesterday I went in to Mum’s room to find the commode upside down on the carpet. There was nothing I could do, but get on with it – it really makes me heave! Of course the urine soaks through the carpet and the poo gets flattened by the seat and various components of the commode. To have to reassure Mum and get her ready, with a nostril full of it, is quite unbearable for me. Mum holds on to those negative experiences for so much longer than she does the positive ones. Throughout the morning she was downcast and sniveling, despite my hugs and reassuring words.

***

We had an interesting discussion on Tuesday morning. We had been out walking a couple of times already and we were having a cuppa and listening to an inspirational piece of music, when she began to cry gently.

She said, ‘Daddy is here!’

During the course of the conversation I learned that she couldn’t see him with her eyes, but that he was smiling and at peace. She was questioning why this happens to her, remembering that it used to happen a lot more, but that she didn’t think he would still be coming to see her. I asked whether she believed in an afterlife and whether they would meet each other again. She didn’t know quite what she believed, but added that if they did meet again, ‘I hope he doesn’t hurt me’.

Poor thing. I shared my hope that, if we do meet again in the afterlife, then ‘Every tear will be washed away’, (*Bible: Rev 7: v.17) That there will be no more pain and that we will know truth.

***

I received a new appointment to see the dementia doctor on April 22nd.

The ‘epilepsy specialist’ in Neurology has written to the GP, saying “These features [on the EEG] are suggestive of an increased disposition to epilepsy. Please let me know if I need to see her again.”

The GP doesn’t know what to do and has passed it back to the specialist to ask what, if any, medication she recommends. The dementia doctor didn’t want to ‘step on the toes’ of the Neurology specialist, so, thus far, nothing has happened. And I missed both appointments.

***

Well, she’s still coughing and it’s causing her so much distress. We went again to the doctor, but the chest infection seems to have gone, so a new investigation – ‘reflux’- is being tried with the intervention of an stomach-acid reducer, ‘Lansoprazole’. I also enquired of the GP about communication from Neurology and ‘Hey, Presto’, there was a letter on the system saying that Mum should start taking drugs to treat her ‘epilepsy’. So, now she has to chew some ‘Tegretol’ after supper too.

***

Another Monday and we are back to the doctors. This doctor wants to try oral steroids again, to see if the cough clears with them. If it does, he will deduce that it is definitely asthma-related and then we might be able to move forward with that approach.

Today we had to stop halfway to school, because Mum was distressed and refusing to walk properly, but wouldn’t say what the matter was. I sent Conor on ahead and Mum told me that she ‘keeps peeing’ and ‘can’t stop’. She said that her clothes weren’t wet though and that she wasn’t doing it at that moment, so we changed direction and went home. She isn’t making much sense at all recently and is often wet. I’m so glad we got the pads.

I wonder if the Tegretol isn’t making Mammy more dopey and confused than ever, but it’s hard to tell, as she has good and bad moments anyway.

I am so grateful for my garden. Several times a day I wander around that beautiful space, marveling at the new growth and constant miracles and change. I watch the birds – still flocking and flying in fabulous formations. I speak to the garden too. Mum talks to the plants as well and hugs the trees – so we must both be potty! I have two lovely, orange crocuses in the front garden and bunches of bulbs waiting to flower all over the place. We are eating lots of brussels now, so that I can get the vegetable patch prepared – to plant beetroot, red-onions, blueberry and blackcurrant. I’ll do rocket, courgettes and beans again later too.

I finished an email and went through to Mum and to make some tea. She was sitting hugging herself tightly, which looked to me like she was cold, but

“No, it’s Roger” she sighed shakily, “He’s dead!” Pause.

“He died last year, Mammy. We went to his funeral.”

“No, he was here, we were talking…and then he had to go…he was there (points to the window) and a car came…it knocked him down…he’s dead! …We were talking here, just now… That lady was here too…I’m going mad! …He came up here and I spoke to him…Is he alive? … I’m going crazy…”

“You are not going crazy, Mammy, you are just mixing up your memories. Roger used to come to see you a lot on Orkney and he came here too, to see us last Christmas, so you have seen him in this room. He did die in a car though; it was tragic, as he mistakenly reversed his car off the pier on Graemsay, after picking up his groceries.”

I wonder whether the ‘visits’ from Daddy weren’t also part of a confused thought and memory process?

***

Mammy has now seemingly forgotten how to swallow tablets – but not food. Yesterday she had to take her first dose of 8 tiny, red, steroid tablets. She just couldn’t do it. The tablets kept lodging between tongue and teeth, as she gulped down several glasses of water. An hour and a half later they were finally gone. We had the same problem then at bedtime with the ordinary tablets – even the capsule she tried to chew and splutter out all the gritty contents.

This morning’s 8 steroids got to me. After spending half an hour on the first two, I abandoned the job and we took Conor to school. We had to come back and take the rest, before I could take her to the Day Centre. It was another hour before, with one still in her mouth, I took her out.

On the way back I spoke to the Pharmacist who said that there are soluble steroids, but the doctor would have to prescribe them. I spoke to the doctor’s secretary and she wrote it all down. She was very empathetic and I felt myself beginning to cry, so I thanked her and left.

What a difference soluble tablets make. And she likes the taste of them. She still can’t do the bedtime ones though.

Week Thirteen

Before Mum was to go today, I decided to confront her about the Day Centre.

“I do like it!” she said.

When I explained how I saw her behaviour, she tried to explain how ‘it’s the suddenness’ of my leaving that bothers her; that I do things ‘too quickly’ and then I’m ‘gone’. I suppose that with not having a memory backup, everything seems sudden and, simultaneously, everything goes on forever? Life must be very unpredictable for her. She seemed better prepared today though, so maybe I should go back to telling her what’s happening next, to give her more time to respond. I used to do that, but it seemed that I was just giving her more time to worry, but things change, so I will too.

At the Carers’ group last night the St. Peter’s Wing were doing their presentation. I felt slightly overwhelmed by the focus on drugs – drugs for the Alzheimer’s disease, for sleep, for depression, for anxiety, for the bowels, drugs for this, that and everything – and also the emphasis on test scores. Mum scored 9 on her test, but she was in a strange place, with a doctor whose English was not very clear, being watched and put under pressure to perform. As a teacher, I know that these conditions are not optimal for anyone. So, because she scored a severe ‘below 11’, she’s almost written off. Last night I took the opportunity to ask the Consultant again about therapy and why I thought that if I supplied some of the facts about Mum’s past, perhaps a therapist could be of help to Mum in ‘unblocking’ stuff. But I still didn’t get a clear response.

Our Social Worker came again today, to see how things are going. I have given her Debbie’s phone number too, as, having Welfare Power of Attorney, the decision of ‘where it is best for Mum to live’ lies ultimately with her. She said there is a place available now at ‘Broad Glade’ and, if I were desperate, Mum would be considered. Believing that the place was full with a waiting-list, the choice came as a sudden shock. I don’t feel I have the right to make this decision alone. I don’t know who I’m supposed to put first. She won’t rush me and she listened to all of my ramblings. It’s good to know that if I do get desperate, they can step in. Please God that I don’t become desperate, but that things will fall naturally into place at the allotted time and I will know peace.

***

At ‘Take-a-Break’ again I witnessed more of Mum’s ‘attractiveness to men. I was aware of two new people having joined the group some weeks ago, but I hadn’t had the pleasure of speaking with them. The man was staring at Mum and asked if we were sisters. Mum didn’t even acknowledge his remark, but sat there serenely smiling. Then he said to me,

“She is very pretty, I quite fancy her.”

“And you are?” I asked, somewhat amused by his fixation.

He gave his name and I looked enquiringly at the lady, who smiled, “I’m his wife!”

We were celebrating another birthday. It makes me sad to see Mum – 25 years younger than the birthday girl – so much less able to communicate or function sociably, yet somehow enigmatic for the gentlemen. I presume that the gentleman flirting was the one being cared for by his wife and I wonder how much more difficult it must be to care for a spouse than a parent.

***

I had arranged to visit the even-more-local care-home, that our Social Worker had told me is considering registering for dementia patients. I had a good chat with the manager, who has been working there for 14 years and has her own mother-in-law living there (which is either a high recommendation or at least expedient). They have between 12 and 14 ‘residents’, but the youngest is already 18 years older than Mum. They do seem very homely and the lady seems to take pride in the place and love the residents. I intend to ask our Social Worker to plan Mum’s next respite there, in the new year and see how well she would fit in. It would be good if Debbie could come and look at these places too and discuss the options with me.

Mum says she wants a diary again. Debbie and Mum always kept a diary. I think I’ll get one for 2008 and we can fill it in together, at teatime perhaps.

I think I’ll also do a ‘This Is Your Life’ style album for Mum – an idea from the Occupational Therapist. It could be very helpful for friends and other volunteers and carers to see something more personal about her and give them more of an anchor for chat and discussion.

***

This morning Mum had two of her funny turns. It prompted me to phone the Neurophysiology Dept. to find out when we can discuss the results of the sleep-deprived EEG, that she had two months ago.

It seems I have slipped up somehow. Apparently Mum had a ‘missed appointment on 3rd November. It was not in my diary and they had not sent us a letter, but I did find it written in the notes that I had made when we last visited earlier in the summer. Hopefully we will be able to reschedule?

These ‘fits’, or whatever they are, do add to my stress, because I feel nervous to leave her alone for even a few minutes, lest she hurts herself. I saw the first one begin and was able to take the cup from her hand and hold her steady until she had finished, but was then afraid to leave the room. After the second ‘fit’, I put her in the big armchair, with the TV for company and went to have my shower. It struck me this morning that the majority of ‘fits’ have been directly after breakfast, and a couple have even been before breakfast. Is it the suddenness of going from horizontal to vertical that triggers them? Is it a change of blood sugar levels? I must ask the consultant, if they give us a hearing.

I thought it best to stay indoors this morning, so we made a start on the ‘This is Your Life’ folder. I found a pile of good photographs to illustrate the major stages of Mum’s life, but I realised how patchy is my own actual knowledge of specifics – especially dates and place-names in her life. I am sure I will be able to find out this information.

***

The ‘Age Concern’ volunteer has taken Mum to a garden-centre for a couple of hours – she is superb with Mum. She is interesting and interested and manages to think of purposeful excursions. This week the purpose is for Mum to get some Christmas cards and to see the decorations. The volunteer friend always says that she has had a lovely day out too.

On Friday we go to Marbella, Spain, to stay with an old University friend of mine. I am so much looking forward to it, but as always dreading Mum’s disappointment, when she realises that we are going away without her.

This morning when I went to wake Mum, she was clearly still in a distressing dream. I barged in with my “Wakey, Wakey, rise and shine”, but Mum was sobbing and shrinking under the quilt, crying, “No, please don’t. Please! No!” I was concerned and curious, as she obviously wasn’t fully awake yet. I stroked her head and told her she was having a bad dream. She continued sobbing and saying, “Mum!” Later, when she was more awake I asked her about it and she said that her mum was very angry with her in the dream. Apparently she was never angry or nasty, ‘in real life’. She couldn’t recall why she had been angry with her or how she was expressing it, but it was clearly causing her a lot of distress.

I suggested that maybe Mum was angry with herself (as she’s often pulling herself down with phrases like, “You stupid woman. You silly thing!”) She agreed that she was angry with herself and said ‘it’s like having a big hole in my head’.

I guess it might be just like that. I told her that I see the disease in her brain like a set of fairy lights – every so often one blows and that bit goes dark. I think that maybe the little ‘fits’ are manifestations, or causes, of those blown bulbs and there are dark patches in her brain where once there was clarity. She likes my analogy and says it feels just like that.

Anyway I thought it would be appropriate to go to the memorial garden today and take some flowers. We did get the engraved marble vase, but haven’t been back there since we erected it in August. On the way to the garden, I asked her to describe her mother and she kept repeating that she “was a lady – a gentle lady!”

We arranged the flowers, said ‘The Lord’s Prayer’ together and thanked her mum for being a gentle mum. She said she couldn’t remember anything about her dad at all

***

Week Twelve

Earlier I was sharing with Mum some of the more general memories from Herbert Street, the Caravan and Porchester Road (Our 3 homes as a family together), but she remembers nothing. I asked if that was frightening – not knowing what your past is, what you did yesterday or what you will do tomorrow. She acknowledges that it’s scary, but wanted more to express the frustration she feels about knowing what she wants to do, or say and realising that she has got it wrong, without knowing why. It must be so frustrating, confusing and very lonely, in a space with no memories to keep you company.

***

Mum is very tearful again today. She couldn’t get dressed and after breakfast she said she would like to read, because she ‘should be able to’. It was distressing to show her why she can’t do it anymore. We looked at one of Conor’s birthday cards to illustrate the point that even if she reads one word, she has forgotten it after reading the next one. Nor does she read across the page, she reads random words vertically down a text, so comprehension is impossible. But she was positive and said,

“I’m gonna keep trying…I should, shouldn’t I? Too many times I try to do something and I can’t, so I throw it away…I’m not going to keep throwing it away…I can keep trying, even if it is silly…I know it is in there, I can see it, but I can’t get it. I hope I get better.”

I asked what was ‘in there’ that she was looking for and she said sadly, but emphatically, “ME!”

“I can see you, Mammy. I know you are there and just the same inside.”

“You are my precious one”, she said, “and I’m proud of you.

Wow! Such comments are more precious than rare diamonds to me.

”Then came the knock on the door and I told her it was the bus.

“Oh, no!” she pleaded, “Do I have to go?”

“Yes, Mammy! I need the space to do what I’ve got to do. I can’t do it otherwise. I’ll see you later.”

She went away with some understanding I hope. I couldn’t cope if she didn’t do the Day-Centre.

***

We have abandoned baths altogether now. After breakfast and shower, when the boys had all gone their various ways, we rested a moment in the peace and quiet and I asked Mum what she could remember of her wedding day. She replied, “Nothing at all!”

“But you haven’t even thought about it yet!” I countered.

“I can’t remember anything.” She repeated. “We were too young.”

I reminded her how Daddy seemed to suddenly change, when a new doctor in Orkney changed all of his medication. She couldn’t remember, so I tried to remind her of the things she had told me, about him becoming ‘a teenager again, smoking roll-ups and starting to be sociable’. I also recalled some of her ‘Tarzan and Jane’ antics, that she had alluded to shortly before Daddy died. It was great that he had a couple of good years before he died, but it was a shame that his medication wasn’t reviewed much sooner.

I also suggested that it was good that he wasn’t around to cope with her dementia and she agreed, but argued,

“I was always like this: getting everything wrong and forgetting everything. He used to hate it and get very angry with me.”

“You were always scatty”, I agreed, “but I don’t think you had dementia. He wouldn’t have known what to do with you now. He might have tried to drown you.”

“He probably would” she nodded, not at all shocked by such an outrageous suggestion.

“How does it feel to have lived 32 years with a man that you knew had tried to kill you and may do so again at any time?”

“I don’t know. We were too young. He was hurting himself. And scared.”

“I guess he was scared, but I don’t think he had the right to terrorise his wife and children! Did you ever think you should have left him?”

“No! How I could I?” she said incredulously.

“I suppose you thought it would be worse if you tried to leave him; that he would find you and kill you anyway?”

She nodded.

“Weren’t you ever angry?”

She laughed. “I would never show it!”

“How do you feel about it now?”

“I don’t know. Anyway I’ve blocked most of it.”

I told her that I was angry about his treatment of her and of us. Although I know that he had his own baggage from his miserable childhood, I believe that he had no right to inflict such cruelty on his family. I think we have the right to be angry. I also loved Daddy and have forgiven him and I pray that he will now know true peace. But the damage takes a lot of healing. It was not her fault. It was not our fault. Daddy was responsible for the damage he caused. And I needed to say that. Mammy is also responsible for the damage she caused by her neglect and coldness – but it is no good opening that can now.

I don’t know how much she followed, but she seemed more at ease after our chat.

In the shower she had such a lovely smile, she almost looked as if she was enjoying the water. I felt very protective towards her, willing her to feel safe and loved and OK. I washed her gently, so much desiring her well-being and healing.

I am feeling even more sensitive, with some guilt, that I am to meet our Social Worker tomorrow to discuss the possibility of NHS funding for long-term care.

***

Chapter 9

I have been thinking of painting a canvas for the dining room, and was saying how nervous I get when painting. Mum couldn’t understand me, nor could she remember the many paintings, metal ornaments and gadgets that Dad had made during his life. Dad never liked what he had made and on completion would either destroy it immediately, or would present it to someone apologetically. Happily I have three things that Dad made for me during my life – he also made tractors, trailers and boats – always his own unique design – he was particularly gifted with metal work and engines.

After I was disowned at 17, I had little to do with Mum and Dad for the next three years, although I did see them, when they allowed it and when I felt strong and safe enough.

Aged 20, I went to live in Germany and shortly afterwards, Mum and Dad moved up to live on Graemsay, in Orkney. My UK home thereafter was ‘Pa’s’ house.

In the early days on Graemsay, Mum and Dad lived with no running water, no electricity nor any mod cons. They had both always enjoyed ‘The Good Life’ on the television, and being away from people and having an old croft with lots of land, must have seemed like their ‘good life’ was finally about to begin. In some ways it was. Certainly their major responsibilities had been left behind. It was only each other to look out for. Eventually they got electricity and Dad put pipes in to pump water from the well into the kitchen.

Every second Sunday, at 12.30pm, they would walk across to the phone-box in the middle of the island and wait for me or Debbie to phone. I wanted to visit them, but whenever I asked, Dad would say no.

Eventually, as a University student, I took the long bus ride from London Victoria to Thurso. Next came the sick-inducing ferry from Scrabster to Stromness, then the small boat from Stromness to Graemsay. I was very anxious, tired and excited. The journey took 2 days. The views and the wind were breathtakingly beautiful on the sea at that time of the morning. Dad didn’t know I was coming.

After an awkward and difficult entrance, we had a lovely time. I adored the place. It was bleak, but not as bad as the picture that I had painted for myself. They had goats, sheep, chickens and geese and Mum had a good crop of potatoes, onions, curly-kale and plenty of sea-weed to gather. It really was quite idyllic. They had lots of land, fields, part of the beach, where the seals liked to bathe; a barn and lots of tumbled down byers and bothies. Dad made his fire breathing home-brews and even got in some wine and beers later to mark the occasion.

I was hoping to build bridges and bury the ghosts on this trip. In a sense, some of that happened for Daddy and I, because he did apologise and I realised that he simply didn’t think that his actions had been wrong. He thought I was just too young. I also asked Mum if I could be her daughter again yet. She said:

“I suppose so. I never really liked you, but you’re OK now.” Then she added, “But I’ll be glad when you go again, because I’ve got a lot to do and you’re upsetting my routine.”

I certainly felt a great deal better leaving Graemsay, than I did going.

I didn’t see Daddy again. He died five years later at the tender age of 49, of ‘acute alcoholism’, during one of those evenings drinking the home-made fire. He was happy and out socialising with his good friend – one of the 23 residents of Graemsay. God rest his soul. I went up for the funeral in Aberdeen and stayed a fortnight with Mum. She was bereft and devastated.

This wonderful poem was written in memory of my Dad, by a good friend of my parents, Tony.

In memory of Dick Haynes

When the moon comes flying over the sea

and the call of the curlew reaches me,

when sunrise turns the stony shore to jewels,

and golden dewdrops gleam on mushroom stools,

I think of island days, oh days of old,

and some were days of grey and some were gold.

We talked of trailers, tackle, a boats prow,

oh many things. And I remember how

we talked the sun down to the ocean’s rim,

and messed about until the yard grew dim.

Oh man, what days were they that passed us by,

under the wind’s wail and the gulls’ cry.

Never another day, oh never another day

and some were days of gold, and some were days of grey.

A.R Copyright [Notes 2]

Week Ten

Chapter 7

Today Mum had the ‘Spirometry’, a breathing test to measure the force and amount of available breath. Mum does fine breathing, but it is so difficult for her to follow instructions other than the most basic. Like last night when she had pulled off a sock with the trousers and I gave it to her and asked her to put it back on. I came back with some fresh drinking water to find her with the sock on her knee and her foot in the sleeve of the nightie. She couldn’t see what was wrong, but when I explained that she had her foot in the sleeve of her nightie, she thought it was hilarious.

As far as the breathing goes, we are going to try a steroid inhaler for 6 weeks, to see if the cough disappears. Unfortunately, the inhaler they’ve given doesn’t fit into the ‘spacer’ device that she is used to, so we are having to try learn a whole new trick.

***

The ‘School holidays’ have begun. Today I managed to get Josh on an important mission, so that Conor and I could pick up his birthday cake, whilst Mum was out with her ‘Befriender’. It looks fabulous – designed by Conor and made by the wonderful people in the cake shop. The cake is a ‘stage’ with a singer, guitarist and drummer, with ‘Ubaphobia’ (the name of Josh’s ‘band’) written across it, with his name and age – 13. The next task had to be carefully planned, so that neither Josh nor Conor would know about it. I had to go to pick up Josh’s present from town. I left the boys in charge of assisting with Mum’s artwork, took the car and managed the wood shop and the drum shop in town, without arousing any suspicion. There is now one ‘Repenique’ (a ‘Samba’ drum) in the back of the car, complete with strap, case and beaters. I’m very excited.

The boys have been talking lots about ‘Faith Camp’ recently and I’m sure Mum must have been wondering what was going to happen for her. She finally pleaded, when the Sitting Service arrived, “Am I coming?”

“What, are you coming camping?” I asked.

“Yes.”

“To sleep on the floor in a tent?”

“Yes.”

“No, mammy, you won’t be able to come with us.” I said.

I imagined with a shudder how absolutely unsuitable it would be. She would hate the noise in the main meeting tent and would need escorting to the toilets every few minutes across the campsite. I would have to watch her 24 hours a day. She knows she’s not coming and she is letting me know that she resents this. I bet she’ll remember that now for the rest of the week.

I got a phone call earlier today from the ‘Evening Post’, to talk about the needs of carers in the light of some new money being ‘poured in’ to help support carers. I reported that everyone in the support services had been great, but that the process was too long and disjointed. The people have been helpful, but the services are spread thinly, are rather inflexible and they don’t interrelate enough. They want to take a photo of me later, to put with the article in tomorrow’s paper. I hope they do put in some extra support. It’s hard to believe that there are ‘more than 80,000 carers in Nottinghamshire – about 10% of the population.’

***

I had a good heart-to-heart with Mum this morning, so I hope it will have helped. She had had a grumpy, silent breakfast as I sat with her. Then she went into the kitchen and started chatting away. She does this a lot – talks lucidly away to herself and says nothing in company. Admittedly, a lot of it is moaning and grumbling that she dare not say outright, but sometimes I’d rather hear it than just feel it.

“Are you talking to me, Mammy?” I called in.

“No.”

“Is it easier talking to yourself? I wish you would talk to me.”

“Don’t I talk to you?” she sounded concerned.

“Not nearly as much as you talk to yourself.”

“I’m sorry. I don’t help you very much, do I?”

“Mammy, you do. You know that the only thing that ever bothers me is when you are mardy and grumpy. Doing stuff for you and with you is good, but I can’t handle the bad moods. We’ve found two day-centres, so that I can do what I need to do and you can meet people and have some fun. After all, it’s much better than following me around the house, looking for something to do.”

“I know, I’m sorry. Sometimes I look at you and I know I’ve hurt you.”

We had a good hug and she went off arm in arm with the driver. I just hope she takes some of that sunshine to the other folk at ‘The Broad Glade Day Centre’ this morning.

***

I knew she would remember that I was going away. She didn’t even break a smile when I put a Willie Nelson tape on. I know she was feeling rotten, but I’m feeling anxious enough about packing, camping and the baby inside; and Mammy is just crying for all my attention. I could hardly stay awake any longer and had to lie down. Simon and I will at least get some time together this week though. I bought a double sleeping bag today.

To wash Mum’s hair now, I climb onto a chair at the open shower door; otherwise the shampoo runs down to my armpits and soaks me. Sometimes I just strip off and wrap a towel around me, but this works too; except today I leaned a bit too far and the chair tipped. Mum couldn’t have stopped my fall, so I grabbed the tiles and all was well, but it shook me. She said she was jealous of anybody who can do things for themselves. I think she is also jealous of me going away without her. Once she was dry, the tears began to fall silently. I kept telling her it was only for a week, Monica was going to visit, camping is completely unsuitable, no toilets nearby, etc…but she kept crying – all the way to the care-home. Conor told her she was snotty and should blow her nose, but she was too far-gone today. I don’t know what the care-workers thought, (there were lots of them around this morning) but I’m sure they’ll cheer her up and she’ll have forgotten it all when we come to pick her up again.

I guess I can turn my mind to camp now. When I come back, it will be August and I’ll have my scan on the Monday. (9weeks).

***

Camp was fabulous. This year is our 7th Camp together. To have a whole week in the presence of God and His children is such a blessing. The boys are so much more independent now, that I actually had a good rest as well the opportunity to pray and worship. According to Josh it was ‘the best camp ever’. In many ways it was my best too. I love being able to introduce ‘my husband’ to people at last. We had lots of afternoons to ourselves, to chat and laze around in the sunshine. Unfortunately I had a bad last night and in the morning I had such pain in my abdomen and back. It took some hours before I realised that I was having contractions. We managed to pack up quite efficiently as the pain intensified, but it was very distressing. The journey was a blur through a pain screen and when I got home I was bleeding heavily and got an ambulance to the West Hospital. Eventually the morphine calmed me down, but it still hurt – I just couldn’t keep my eyelids open. I had miscarried before getting to hospital, but the rest still had to be ejected, so they kept me in there until Monday evening. Two beautiful babies now that were not meant to be. They are in God’s hands, but I don’t have the space to grieve.

Meanwhile Mum was supposed to come home on the Sunday, but Simon was able to explain the situation and they were prepared to keep her one more day. Simon fetched her on Monday but I wish I could have had a day or two at home alone to rest and grieve. I think Mum had a good time. Pat, Monica and Alf had all been to see her and said she seemed to be well looked after.

I’m beginning to wonder whether she is perhaps happier with the routines and life in the home, than she is here. She rarely seems to be happy here, no matter how much we lay on for her. At least, she’s happy during the activities, but as soon as she is left just one moment she gets restless and starts to flap with that ‘hanging about’ expression. Last Tuesday was a good example: Pat came to visit, then her Befriender came and they went out for a long walk and ‘put-the-world-to-rights’. They stopped for coffee and cakes and then Mum and I toured the garden and sat out for a chat. At 2pm the O.T.’s artist came and Mum painted her papier-mâché plate; then, after tea, cakes and more friends visiting, the Sitting Service arrived and they had a good laugh, listened to music, had another long walk and drink in the pub… At 7.30pm, Mum’s sister phoned and spoke to her and I heard Mum complaining:

“Nothing much at all! I don’t do anything. I’ve just been hanging about!”

I made sure I spoke to Julia myself and used that day as an example of what ‘just hanging about’ often is in reality.

She’s out walking with her Befriender again now. I often wonder what Mum talks about to other people. I’d love to be a fly on the wall. I want to try doing some alphabet and words later, because whenever we’ve done it in the past, she has improved with the reminder and we’ve vowed to do it regularly – like so many good habits and intentions.

***

It wasn’t a good idea. Not today anyway. She knows how to read the letters of the alphabet still, and can read individual names, but cannot write anything today. She was shrinking her neck backward into her shell and when I encouraged her she would say, “I don’t know what I’m supposed to be doing!”

“It doesn’t matter if you don’t want to write anything today. Your reading is still good.” I tried to reassure.

Then I got out some old photographs, because she usually enjoys looking at them and comments, “I haven’t seen that one before” and smiles longingly as she recognises past times. But not today. The only picture she recognised today was of me, taken when I was about 6 years old. She identified a photograph of her Mum – but she didn’t recognise herself or her sister smiling proudly on either side of her mum. Now she feels inadequate again and I am exhausted.

***

Mum is seeming to deteriorate these past weeks. This morning I woke her, gave her her clothes and came down to make breakfast. After 25 minutes she had done her top, but was rolling the trousers round and round her hands. Taking the trousers from her, she screwed up her face, saying there was such a ‘nasty smell in here’. I said it was probably the commode, as she had used it in the night.

“No I didn’t!” she suddenly growled at me.

“Yes you did!” I retorted. “Do you want to see it?”

I didn’t use it at all. It wasn’t me. I haven’t been today.”

“Maybe you haven’t been since you woke up, but you used it in the night. No one else comes in to use it, Mammy.”

“They did. I didn’t.”

“Whatever! Please don’t argue with me, Mammy. You don’t remember what you’ve done 10 minutes ago sometimes, so you probably don’t remember what you did during the night!”

“I do know…”

Nauseous, rattled and wanting to stick the commode in front of her nose, I dressed her and led the way downstairs. Conor tried speaking and playing with her, but to no avail. I’d successfully spoiled her mood for the morning. Despite a few meagre attempts to converse, we did the school walk in near silence, holding each other’s sweaty mitts.

One aspect that has noticeably deteriorated is her proprioception. When she wants to touch a part of her body, for example, she reaches her hand outwards to external things. In the shower if I give her the soap and ask her to wash ‘down below’ she reaches out, touching all the sides of the shower-cubicle trying to find the bits to wash.

I now have to wash her bottom for her, she doesn’t even wipe it now; she gets the toilet-paper, screws it up and shoves it into her pockets. At the undressing end of every day, when she gives me her rolled up trousers, I tip several hands-full of tissue into the bin. There is no point arguing or showing her the evidence, because she believes she is doing it properly and gets upset if I challenge her. Sometimes, like this last week, I feel the need to challenge her; but I regret it later.

It isn’t her fault, I have to remind myself – frequently.

Two weeks ago she had another fainting fit. Conor was with Nana in the dining room when she suddenly slumped off the chair and hit her face on the floorboards. Conor was freaked, but Nana did her usual jerks and had a nosebleed. She was a bit fazed by the blood and by finding herself on the floor, but we got her into a comfy chair in the sitting room and attended to her nose. She was complaining about her teeth, which she kept dabbing with her fingers. Suddenly she pointed in front of her to the left and exclaimed, “What’s that?” I looked over towards the TV, which was switched off, and asked what she meant, but she kept pointing and saying “It hurts!”

“Touch what hurts, Mammy” I suggested and gradually her hand closed in towards her face and I realised that underneath her fringe a huge swelling had appeared over her right eye. We got an ice pack and phoned NHS Direct, who sent a couple of paramedics. They did a thorough check of Mum’s blood sugar, oxygen, blood-pressure, heart, pulse, breathing and felt around to check that nothing was broken, cracked, or out-of-place in any way. They recommended Paracetamol and sleep. Poor Mum. The next morning she slept in, but had such a whopper of a black eye. The following day was our planned ‘boat trip day’, with the ‘Take-a-Break’ group. Mammy awoke with two purple eyes, but was feeling much better in herself, so we went to the river. Mum became tired very quickly and I had to answer lots of questions about Mum’s ‘panda’ face. I almost began to feel guilty – like I had given her the black eyes.

Week Nine

Chapter 6

The current night-time routine goes something like this – Mum comes to say prayers and join our ‘goodnight time’, usually in Conor’s room, as Josh’s room is up the second flight of stairs. Simon and I take turns to be with each child. Then I take Mum to the bathroom and for night-dress, medication and bed. Medication is only a mini aspirin (against strokes), a Simvastatin (against cholesterol build up) and two puffs of the Salbutamol (to stop the wheezing). She is usually so tired by this time that her eyes are flickering and she cannot think for herself, so getting undressed is very much a guided affair. I give her a tablet into the hand, she pops it in her mouth and then looks into her hand and at me – back and forth.

“Do you need your water?” I’ll ask..

Then we get ‘the shakes’, a few attempts to swallow and then the next tablet. Lastly, the Salbutamol – she looks surprised to see it, screws up her little nose and squishes it against the mouthpiece – she looks like a little pig – and we both laugh – it’s part of the routine.

“Suck!” I instruct… “Now breathe out through the nose… Suck…out through the nose…Well done!”

Nine times out of ten, she will giggle and say something along the lines of,

“What is it supposed to do?”

And I take a deep breath, smile, and explain all over again.

***

I awoke to the sound of Joshua’s alarm this morning, at 6:30am. Mum came down then with her trousers on back to front, but that’s OK, as her tummy is bigger than her bottom, so they actually fit better that way. She had her shoes and socks on and an open cardigan on top of her bra. Something else wasn’t quite right though and she was particularly unresponsive.

When finally all the boys had gone and we sat down with a second cup of coffee, Mum said, “Oh yes, there’s something I need to tell you.”

In essence she said that she had got up in the night, looked around and wondered where everybody was, come downstairs, looked this way and that, and had gone ‘out onto the road’ to find us. Then she had come back in again, but couldn’t find anyone.

“It has been such a long night!” she moaned.

I don’t think I handled it correctly. She clearly hadn’t been out onto the road, or out of the house, because she cannot get out. She has never yet managed to get out of the front door, nor close it. The door is so stiff that you need two hands, elbow grease and a knack. And it is extremely noisy to open and even more so to slam shut.

But she had her story firmly in her mind. Somehow this sticks in her memory as real to her. Was she hallucinating? Had she dreamt it? Had she heard the road and looked out of the window? Was she remembering a childhood reality or fear? I don’t know. I tried to explain all of this, but she refused to accept it, “because I was there!” she insisted.

So I asked her to go out and show me what she had done. This was perhaps cruel, but I didn’t want her believing that she was unsafe and able to wander in danger. Needless to say, she couldn’t even find the door to the road, so I showed her the door and asked her again to show me where she had gone. She could not open the door. Of course, then she was frustrated that I didn’t accept her story and was ‘scared’ by the confusion. More hugs and a chance for her to release some more tears.

I should have pretended that she was right.

I tried to make her laugh with the idea of her story in this evening’s papers – ‘page three lady, out in the road early this morning, looking for talent.’

The bus came ten minutes later and Mammy still seemed ‘flat’. I hope she doesn’t carry it with her all day.

***

Mum has been dissatisfied and ‘bored’ all day. I’ve had some chores to do, but we went shopping together and visited Pat, she spoke to her sister on the phone, did a tour of the garden, had tea and cakes, and listened to ‘Far from the Madding Crowd” on cassette. By 7pm, I thought she was going to burst, she looked so angry and huffy.

“All I do is wander about, with nothing to do. Just walk about.”

She cannot remember going out today, or anything else she’s done, so she does believe that all she does is wander about. Sometimes I have nothing useful left to say. I do recap on the activities of the day for her.

Today she did apologise, after my explanation. She does seem to realise when she has been ‘mardy’.

I’m also a bit nervous for Conor on Wednesday – he goes for his general anaesthetic and teeth pulling.

The boys don’t know I’m pregnant yet. That’s the other thing – this is the start of my 7th week, and the last baby died during the 7th week, they said. That is making me out of sorts too.

***

Today we’ve been busy all day and it has felt good. After the usual Monday routine, we walked up to the church where I recently discovered that Mum’s mum and dad both have their ashes ‘buried’. Mum and I sat contemplating in the beautifully peaceful memorial garden. I discovered that the vicar lived next door, so, feeling brave, I rang the bell. He was very accommodating and took us to see the plan of the garden and the book of records – their names were there: Elsie Marjorie Cowen, died 1982 (A8) and James Alvin Cowen, died 1992 (B39). It was very satisfying and felt quite strange, that after all these years, Mum and I should end up living a ten minute walk away from her parents’ place of rest.

We have decided to get a marble memorial ‘flower-pot’ made as soon as possible. Mum is very pleased with the idea and wants to pay for the work, which is fitting. Anyway, with the back pay coming from the Pension Service, she can afford it now.

I want to be buried when the time comes.

I asked Mum, but she doesn’t seem to know. It became a family discussion and Josh said he wants to be ‘left to nature’ or fed to the lions and Conor wants to be cremated and his ashes thrown to the wind from the top of a high mountain.

***

I loved my Nana and Granddad Cowen. They were the only family to ever to take us on holiday and they told amusing stories, sang songs and were a bit ‘risky’, cheeky and daring. Nana wore make-up, fur coats, perfume and lots of smiles, and she chain-smoked. She was riddled with cancer when she died – only 65. Granddad was 5 years younger, wore a cap, braces and smoked a pipe. He was not much liked by his own kids, but loved by his grandchildren. He was 70 when he died. Nana was an Anglican and brought her children up through the church to confirmation. I remember Mum telling me, many years ago, that she had decided at the wise old age of 13, that the Bible was a ‘bunch of lies’ and that she was a non-believer.

Years later, when Daddy died, Mum used to experience ‘him’ coming to visit her regularly and this caused her to ‘know that there is life after death’ and accept Christianity for herself. As she put it in a letter to her ‘Aunt Grace’, in December 1995, “It’s my first ever experience of anything ‘unusual’ and now I’m a firm believer!”

***

Last night was the ‘Joseph and his Technicolour Dream Coat’ presentation at Conor’s school. It was all a very welcome distraction, because I was getting nervous about today. We were up at 6.15am for Conor’s general anaesthetic and operation. All were good-humoured at home and no one dawdled getting up. Then Mum collapsed again at the breakfast table and fell off her chair. We kept it low-key, as again she didn’t know it had happened. Simon has taken the morning off work to help. In the car to the hospital, Mum had another turn. Simon will have to inform the Day-Centre when he drops her off later. I keep a record of all her fainting fits.

Conor and I arrived at the hospital in good time, but had a very long wait. At first we had fun, playing a game with two soft toy characters that he’d brought with him, then we had some great chairs to play in and two and a half-hours later we were called to the operating theatre. The anaesthetist was excellent. He kept Conor distracted beautifully whilst he put the needle in. I watched it go in, then looked at Conor and got such a shock. He was out cold. They told me to kiss him and go. His eyes were open like a corpse, and it was all I could do not to close his eyelids or to cry as I kissed him.

“Look after him please.” I pleaded.

I went and prayed, marched around and drank some coffee.

He was ‘down’ for 70 minutes, due to his little body, they said. He was very woozy afterwards, but he wouldn’t sleep. He kept trying to stand up, only to find his legs too weak and would fall. He was feeling sick and of course his mouth was still all very numb from the anaesthetic, which made drinking water and eating ice cream satisfyingly messy.

Then we had a heart tugging film to cuddle up to – just Conor and I. I feel like I’ve been awake all night and day – that spaced out feeling.

Mum is home from the Day Centre now and Conor’s got a big fat lip and is complaining of a bad back. After tending to him, suddenly I felt compelled to look out of the window, just in time to see Mum disappearing out of the back garden. Down I ran and caught her at the corner, heading for Burton Road. I suppose I should have waited to see what she would have done, but this time I couldn’t leave Conor, so I had to bring her straight back. She insists that she knew where she was and how to get back, but I don’t have the energy to risk losing her today.

Week Five

We arrived in good time to ride the car park helter-skelter to the 7th floor, and then had to descend the stairs on foot. This is challenging for Mum, but she managed exceptionally well today. We got a good rhythm going. “1,2,3…9,10 and round the bar on the flat… and 1,2…” all the way down. It generated a good few smiles from the other visitors. The West Hospital is well sign posted inside, but it still takes some concentration to get to the right block, the right floor and the right department. I got it wrong. It didn’t seem to matter and we didn’t have long to wait today.

The Neurologist wasn’t a native English speaker and Mum found her difficult to understand, but she was very sweet to Mum, explained things well and listened well to me. She concluded that Mum has a ‘form of’ epilepsy – (not the more well known one) – that is affected by ‘frontal lobe seizures’ and is linked to the progression of the Alzheimer’s. She will have to undergo some kind of ‘brain wave monitor’ to be sure of this diagnosis, but that won’t be today. With epilepsy she will have to be on medication, which may have side effects and…she will see us again in November. Meanwhile, if she goes all ‘stiff and purple and foams at the mouth for 5 minutes’, then I am advised to call an ambulance.  Apparently the ‘wobbly eyes’ is also a symptom of the Alzheimer’s and nothing can be done about that.

Back up 7 flights of stairs and then spinning the wheel back down again. Only £2.50 for the parking this time. Looking through my calendar I see that today was our 25th appointment at a clinic, hospital, dentist or optician since January. That doesn’t including all the regular trips to the GP. That’s well over £50 in parking fees as well. I now tell Mum she’s going to have to dream up a complaint with her ears, nose or kneecaps, as these are the only bits that haven’t been thoroughly examined yet.

It was still early so I delivered her to the ‘Broad Glade Day Centre’ and went off looking for cards and presents. I went into a local gift shop and came out feeling very fortunate. No matter what your circumstances, you always manage to meet someone who has been through something worse than yourself.  I mentioned my situation with Mum and realised again how very blessed I am to have such a supportive husband. Simon positively encouraged me to keep her here, at least until we could decide what to do, but he wouldn’t have let me send Mum back to Orkney, even if I had wanted to. This lady’s husband is refusing to let her care for her mum at home and she was heart-broken.

***

Mum loved her home, ‘Clett’, on Graemsay, where she could roam all day, and always someone would find her and bring her home again. She used to tell me she was ‘in the safest place in the entire world’. Maybe she was, but if the council would oust her and put her in a home, miles from her family and friends, she would possibly wither and die, confused, angry and terribly sad. I can’t think how awful it would have been.

When Simon married me last June, he suddenly had a family of four. He knew he would be taking on the boys, but neither of us expected a mother (in-law). It was a strange four months before Mum came and it seemed somehow unreal.  The boys were settling in really well, which was a great relief, and Simon was hardly affected by the change of location, as his work and pastimes (the computer) had come with him. But I was very unsettled and anxious. I had busied myself with domestic stuff and exploring the garden. The big job was to rid the garden of the ‘ground elder’, which was a huge, underground, spaghetti root-ball extending the length of the back garden. There were rosy apples relentlessly showering the garden for much of that time and I was busy finding good apple recipes. I visited friends, attended school events and became ‘Parent Governor’ at Joshua’s secondary school – which seemed necessary for my professional development and interest.

There was also the possible luxury of Simon and I slipping away together after lunch… I became pregnant and tried to get plenty of rest, reading and living very much in that hormonal chaos of early pregnancy. The overstated, ‘blooming time’ of sore boobs, greasy hair, nausea and ravenous hunger.

Then we went for our first scan – 6th December – so excited.       

The baby was dead.

The shock numbs all sense.

Medical intervention was deemed necessary as I had a long journey to make to Aberdeen, to meet Mum for that first Christmas holiday.

So I did the hospital and fetched Mammy from Aberdeen, for our first Christmas together since I was 17.  Roger, our friend from Graemsay, had taken Mum down to Aberdeen and booked us all in for the night. The plan was for Mum to return to Orkney with Roger on 8th January 2007. I was then going to look for supply work at local primary schools and other ‘early years’ settings…but seemingly that wasn’t part of the bigger picture.

A man’s heart plans his way, but the Lord directs his steps.’ (Proverbs 16:9)

***

Tonight Mammy had what I think is another little fit. It didn’t look all stiff and straight like the Neurologist demonstrated earlier, but she was shaky and jerky for about one minute. We were watching a film and she had begun to doze. Again she sat up suddenly, wondering momentarily where she was.  I wonder how many of these episodes she actually has?

I first noticed these ‘fits’ on March 12th. Mum had had a shower and I was helping her on with her pants, when suddenly she was less responsive to instructions and then began to topple backwards. I remember it all being in ‘slow motion’, as I caught her and tried to hold her upright to steady her and get a response. She became very heavy and as I tried to sit her onto the chair she began throwing her arms and head about and shaking in a jerky sort of way.  My heart was pounding, but Mammy looked up at me and said “Am I ready yet?” with a big smile. She had no idea that anything had occurred, so we came down and had breakfast – I thought maybe she had low blood sugar – and she was absolutely fine. As I was putting her plate back in the kitchen, there was a slump and thud and she was out cold on the floor – her head just missed the brick hearth by an inch. Again, swooping to her side to reassure, her arms, legs and head threw themselves about shaking jerkily and then she came back round. This time she looked very drained and was confused to find herself on the floor. I sat her down and pulled up close beside her to hold her and try to explain what had happened…and she went again, within minutes – slump, jerks, shakes and back again. Simon called NHS Direct and an ambulance. The paramedics came and we took Mum to the hospital to be monitored. It was a very unnerving experience – just not knowing what might happen next and having no control. 15 weeks later we still don’t really know what it is, or when or why it may happen again, although we do suspect epilepsy and are hopefully en route, via the neurologist, to a conclusion.

She had another episode in the bath on May 15th,  and that one tonight, but I’m sure she has had many more. On that first Saturday, when she went into hospital overnight, (ostensibly to be monitored, but wasn’t) I phoned a couple of people from Orkney to find out whether this had been a common occurrence in the past. I discovered that several Graemsay residents had all witnessed Mum’s ‘funny turns’ and that once she had even been helicoptered over to Balfour hospital, after one such episode. I also learned that the doctor there had reduced Mum’s dosage of Aricept because of this. Some communication between health professionals could have been useful here. When I went to collect Mum from hospital, after ‘being monitored overnight’, I gave the consultant this information from the islanders, and he said to discontinue the Aricept altogether, admitting that he was aware of such possible side-effects. I was particularly cross that when she came home it was obvious that she had not even been undressed for bed and came home with the tube for the needles still in her arm.

***

Another morning: and I nearly slept through it. Simon kindly let me have a Saturday lie-in, whilst he got up to see the boys off to Music School. Mammy got up very early too, but was happily being entertained by some Saturday morning programmes on the wireless. I say happy, but apparently she needed a hanky, as a lady on the wireless was recounting her ordeal of when she lost a small child… I would no doubt have been blubbering too, had I been awake and listening. I emerged after 10am and later I asked Mammy about the child she lost.

There are 22 months between my sister and I, but between us, on 15th February, 1964, another baby girl was born and was named Avril, after her Mammy. The baby died. Mammy can’t remember whether she was weeks, days or only hours old, or even whether she was born dead. She remembers that no one else was in the house, that the baby was ‘tiny’ and she remembers Daddy being angry and blaming her. Apparently, the baby died minutes after being born and her sister believes it was because Mum had starved herself, in order to feed Dad and baby Debbie.

Dad can’t have been angry for long, as I must have been conceived within the next few months.

I have very few (conscious) memories of our first house on Herbert Street. I remember being served privet leaves for supper once, after being warned not to eat them off the bush. I remember that the house was one of a terrace and that one winter it snowed so much that the back gate was nearly buried and Dad leapt over it with such style. Sometimes I was so proud of my father and thought him very cool and handsome. Most clearly I remember our bedroom at Herbert Street – early one morning, in May, just after I became 4years old, Dad came upstairs, sat on the edge of my little canvas camp bed and told us that we were leaving the house and going to live in a caravan. I took a mental photograph of that room, which has never left me. I have had other, hypnotherapy-induced memories of that house dug out of my sub-conscious mind over the years – but they were very sad and scary.

***

Chapter 4

Mammy has come down in her vest and trousers, so I fetched her a top and she wants to find her shoes, so we are going hunting. She has a funny way of saying things to sound as if she has understood everything.

“It’s that way,” she grinned, with both arms out, pointing in opposite directions.

Gradually she inched her way hesitantly down the hallway and then turned, as if to come back, but I was in the way, so she continued…recognising the stairs, going up…and straight along to the bathroom.

“I’m here”, she announced. She had forgotten what she was looking for, so I reminded her of the mission. She remained standing.

“Is this your bedroom?” I asked, almost surprised.

“I think so”, she said, looking at the bath and peering gingerly at the label on the door. Realising it was the ‘bathroom’, she laughed.

Eventually she did find her room and had no trouble exchanging slippers for a matching pair of shoes. Well done, Mammy.

Back in the kitchen, she was hovering behind me as I prepared food for the freezer.

“Who said you could watch me?” I laughed cheekily.

“But you’re my Mummy!” she whined in a pretend little-girl voice.

It’s funny, but more than one person has introduced me as ‘Avril’s Mum’ already. I guess the roles get fixed in the brain more than the ages.

We are going out to a restaurant this evening, so I suggested a rest first, since she was up so early today.

“Do you know where to find the ‘sitting room’ today?” I checked.

“Of course I do…it’s here, where we live!” she laughed.

I must take her for a bath soon. I wonder what adventures we’ll have today?

We had a lovely evening at the restaurant, but I was a bit worried at first, because when she sat down, Mammy looked as if she was having a panic attack. A cacophony of voices and other restaurant noises enveloped us and it was all too much for her. I was trying to help her choose a main course and I thought she was going to freak on me again.

The last time I took Mum to church in town she did freak and cry and I had to take her out. She complained that the noise was ‘just so intense’. It is loud. We discussed how it felt for her and whether earplugs might be a good idea. I think it might be like it is for babies – they cry when there’s a lot of noise that they cannot understand, but as we get older we understand the noise and can tune some of it out. Some autistic people cannot tune it out either and maybe Mum can’t now? I don’t suppose it’s worth having the ears examined – I’m sure they’ll just say that it’s another symptom of the disease. Then we’ll be down to just ‘nose and kneecaps’.

Before we went out Mum gave me a big hug and thanked me for everything and for looking after her so well.

“I hope I don’t annoy to you too much?” she said. Of course she does sometimes, but that’s my problem.

Week Four

Yesterday, we dropped off Conor at school, went to see Isabelle’s mother, Pat, and then headed for the ‘TAB’ (‘Take-a-Break’) Carer’s group. We had to find a toilet for Mum halfway there, but made it. Mammy was especially confused this morning and my patience was flagging.  The ‘TAB’ are such a lovely group of odds and ends – a whole range of ages – from a 17-month-old sweetie, through the whole spectrum up to the oldest, Jack, at 97. Olive just had her 90th and is a bundle of smiles and encouragement. They consists of ‘Carers’ and the ‘Cared for’ – with a wide range of care needs – real people, unpretentious, kind, daft and, above all, supportive of one another. I am very much a newcomer, but they have really welcomed us both. It was they who had organised yesterday’s trip to West Midlands Safari Park. There is always the ‘raffle’ – even on the coach.

Mammy didn’t seem to like the coach journey, although it was straight forward (except for the necessary right and left turns); but Mammy had me round the bend. She was huffing, muttering and shaking her head, sure that the driver had got it all wrong and was going around in circles. After about an hour and a half, she looked about to burst with frustration, wondering “why has he brought us all this way and now we’re back where we started from and haven’t done anything!” She would not be reassured that in fact we were approaching Kidderminster and not far from the Safari Park. She had that ‘I know I’m right and you’ll see’ expression, that I remember so well. Then of course there was the prudent toilet-stop at the first car-park and back into the coach again. That took some explaining. Unfortunately, it didn’t then ‘all become clear’, because whilst the driver reeled off the names of the species of animals that we were about to see, and the rest of the crew cooed and ‘ah’ed, poor Mammy could see nothing.

I was excitedly saying, ‘Ooh, look this way, Mammy; here’s a white tiger/ a shabbily dressed camel/ a rhinoceros/ an elephant…’ whilst Mammy became more and more cross and frazzled, unable to see anything at all.  The animals were staring in through the window at us, but Mammy couldn’t see them. She refused keep her glasses on and kept shaking her head and humphing. She did manage to see the zebras though, or said she did.

Eventually – about 2pm, we were off the coach for a walkabout. We grumps had one and a half-hours to explore the rest of the place and Mammy relaxed. She enjoyed the sea lions and could appreciate the snakes, alligators and a lonesome leopard. We ate lunch and had just two more tasks – ice cream and precautionary toilet stop before re-boarding the bus.

 “Two 99s and some of that stripy fudge, please.”

 Mammy always used to relish a ‘Mr Whippy’ ice cream, so it didn’t occur to me that it might now pose a problem. Have you ever considered how unbalanced a ‘Mr Whippy’ ice cream actually is? It  takes some skill to hold the fragile, hollow cornet straight, whilst reaching to lick the top-heavy creamy melt from above. It proved too difficult for Mum and after a crazy few moments trying to help, I ended up carrying them both, conscious of our time running out and trying to get her to stop for licks on the way.

Toilet next. I hope they won’t go without us.

“Mammy, you’ll have to be quick, because we’re already a bit late and Nottingham is a long way to walk to!”

Oh, the noises that Mammy can make. Public toilets are not the most congenial place to enjoy an ice cream, but Mum’s is dripping down through the cornet all over my ankles and shoes.

“Hurry up Mammy, your ice cream has nearly gone!”

Then there was a quick hand-wash and a run for the bus. Last ones again. I gave her the remainder of the ice cream and sat down two rows behind. I’d had enough.

Someone said, “Is your mum alright with that ice cream?”

“Am I bovvered? What Mum?” are what sprang to mind.

The journey out there had been largely silence, except for the grumbles. I had tried to make conversation, but gotten nowhere. I told her I was going to sit her next to someone else on the way back – at least she might make an effort to be sociable. I wished I’d remembered to bring a book..

 “What was your favourite animal?” I tried.

“Errr…a cat!”

I don’t know whether it was an attempt to make conversation, but as we neared Carlton, she asked “So, what are we doing tonight?”

“Same as ever,” I growled selfishly, “Nothing much!”

But she does know when she is being deliberately difficult. Later she apologised again for being so mardy. I suppose anyone would be though. It must be so terribly frustrating and humiliating to be so incapacitated and still so aware of it.

Still, I need a break now and we are back just in time for me to take Conor swimming – ALONE. Simon is back from work and can hold the fort.

***

Mammy was still hard-work last night – struggling to see the film, finding dinner difficult to catch off the plate, and as for the shower…another one of those “I’ve just done that…” grumbling sessions; ‘take a slow, deep breath Dawn’…

I do need to talk to Simon.  We have not had the opportunity to be alone recently, not awake enough to talk, anyway.

Given that yesterday was tricky, I tried to go in early enough to reassure her today, if she was up. She was up. What a smell. I’m really not very good at dealing with the commode. Simon is excellent. His nose clearly isn’t as sensitive as mine. It has advantages for me in the garden and disadvantages elsewhere, clearly.

And what a sight. One has to laugh as well, but today it didn’t seem kind to laugh. She had found her clothes and put the lovely red top on inside out. She had a shoe on one foot and a sock on the other and her trousers screwed up in a knot on her lap. I gave her a hug and sorted the trousers, then put both shoes together and gave her the other sock to put on. (We can turn the top round to show it’s pretty spangly bits after breakfast, I thought to myself.)

She succeeded, but it had taken a lot out of her and she needed more hugs and encouragement.

If it were me, how would I like to be treated?

Conor was great over breakfast, but he’s very snotty and barking too. I think we’re all ‘barking’. He had Mammy laughing with his ‘hanky’ being in his pant drawer, having a bit of ‘hanky panty’’.

Conor is not so enthusiastic about so many journeys alone to school now. But there’s not much I can do about it, unfortunately. He is old enough to go alone and I know that the angels go with him. I might see whether Social Services could offer any more support for Mammy and myself and family? I don’t like asking. They have offered us a lot of support already, but it seems to take a lot of meetings and forms to get anything underway. It is worth it though – for me it is.

After all the boys had left and Mammy was rearranged, we began our regulartour of the garden – of all those beautiful roses, leaves and other flowers that  “don’t look real, do they?” 

Mammy loves the garden and I inherited that love

I reminded her that tomorrow we have an appointment at Neurology at the West Hospital, to see whether she has early onset epilepsy. If not, we want to know what it is that causes her occasional fainting fits. We also want to ask them what is causing her not to perceive what her eyes can, according to the optician, clearly see. Perceptively, she then commented that her eyes have difficulty when she is under stress, which is definitely something I agree with, but also when she is tired. As she stood close to tell me this, her eyes were wobbling and blinking furiously and I asked if she was stressed talking to me. She said she didn’t think so, but thought that maybe she was going mad.

I think it’s a fine line for all of us – between sanity and insanity – and I’m sure that we all regularly cross those lines. I appreciate it though, when she can converse with me.

She has a fabulous smile when she wants to. Two men on the bus were good enough reasons to want to smile today. She looked a picture in her tinted glasses with dangling gold chain, her red sparkly top and her newly washed hair. She can be such a flirt – playfully – but will often come back from a Day-Centre announcing that she has “another admirer” and then be coy, shrugging dismissively when you pry further. She complains that they are ‘much too old’ for her – being only 61 years young herself.

We did have a laugh last week with that – Conor, Mammy and I were in the chip-shop, waiting for our order, and a smallish, jolly-faced man walked in the door, just as Conor and Mum were playing a cat and mouse game around the pillars in the shop. Mammy emerged from behind a pillar wearing Conor’s coat on top of her own and an ‘I’m going to gobble you up’ sort of manic grin and went straight for the man. He was fairly nimble and dodged, but Mammy went trotting after him. Conor was in screams of embarrassment and laughter and calling “NANA, I’m here!”  I think she realised her blunder, but wasn’t going to show that it hadn’t been intentional. What a giggle.

She’s done that a few times now – followed the wrong person. She panics a bit crossing roads and if I am not holding her hand she can easily march away with the fastest walker. Recently, I was holding her hand and a jogger-lady with dyed orange hair trotted past on Mum’s side, looking for a space to cross the road. As she darted across the road, Mammy pulled at me to run after her. She looked at me restraining her, momentarily very confused and we both laughed.

***

Every morning you renew your mercies” is a line from an ear-worm this morning. After a late, great girls’ night out and a few glasses of wine,  I had all the ingredients for a dodgy day today – what with the rain and a trip to the car park at the West Hospital to look forward to. But I have felt very alive and full of joy and gratitude today. Us women sure do roller coaster with hormonal moods – I do anyway. I wrote a poem about this from my perspective:-

Roller Coaster

Climbing, soaring, awesome

falling…

The excitement is breathtaking as the ride just begins;

the path I steadily climb,

higher and higher, the air getting thin,

exhilarating rushes of wind;

Reaching a peak it rests for a while…

the views from up here, I inhale –

the beauty, creation, the planets and stars

from this awesome height I rejoice…

With joy and with awe I would stay here forever

a sigh as my head tumbles back…

but this is the ride where high turns to low…

and this will not last,

back down I will go,

with a scream and a tear

and a moment of fear;

I will land with a thump back below!

The body has landed but the rest is still up there,

sick with no stomach and empty inside;

and now it all seems, back down on the ground,

that this is reality and that was a dream…

Climbing, soaring, awesome

falling…

Why don’t I get on the nice Carousel,

that gently rotates all the time?

No ups and no downs, no loops upside down

no sickness or wobbly limbs.

I could pick a gold lion, a lamb or a horse

and wait while each animal follows its course –

round and round

round and round

round and round…

But I’m not alone on the ride of my choosing,

Jesus knows what it’s like.

His highs and His lows were deeper with love

than mine ever were or will be;

and God raised Him higher and higher

and higher

and he’s here even now with me:

giving me hope

that I’m never alone –

In the climbing, the soaring

the awe and the falling –

and I trust He is leading me home!          Dawn.

Week Three

Anger has been an emotion so repressed in me, that I am still on a journey to get to know it. During my more recent adult life, I have attempted to feel appropriate anger and allow it to play its intended role in the healthy balance of life. I can identify two of the first and last times that my anger was spontaneously expressed and the reason for me deciding that anger was dangerous and to be hidden at all times:- A weekly treat, at the caravan, was a yoghurt from the milkman. I usually had apricot, but one week I chose strawberry. As I got near the end of my yoghurt, I came across an enormous lump of pure strawberry and eased it proudly and gently from the pot with my spoon. Daddy was in a ‘good mood’ and began to tease me, saying he thought it was a dead spider and should take a closer look. I knew he was teasing and I was laughing, but still, you didn’t argue. He peered closer, looking more and more concerned and then, snap! He had eaten it. I was shocked and without thinking I took some more yoghurt on the spoon and flicked it at him. I would never do that again. I was spanked and roared at and made to sit on the caravan tow bar for the whole day until bedtime. I also remember once when Daddy came to the square to pick us all up after school – he was teasing again, chasing and dodging, but I caught him and kicked his shin (probably on purpose, but I don’t know). Well, he kicked me so hard that I was propelled several feet and lay crying on the floor. I remember that day as the one when I resigned all anger. I knew it was better unsaid, unfelt, buried.

Mum was always there, I guess, but as we were indoors so rarely, I recall little about her. I do remember that we had a dog called Jackie, that my mum loved. One day we came home from school to find Mum crying inconsolably, because another caravan-owner had put poison on the garden and Jackie was lying dead. Daddy was very angry.

Mum loved the animals and the garden. She had a fabulous array of aromatic wallflowers and pinks, lupines and marigolds. To this day, I adore wallflowers and the scent of them immediately transports me back to caravan days.

Mammy also taught me to sew and to knit. At the caravan, Debbie and I would sit in the ‘lean-to’ and make little fur cats and cushions, to put in empty sweet tins as presents for our friends.

One of the things that did impress me about my mum, when I was little, was that she was academic. Dad could neither read nor write, when he left school, but Mum had me reading, writing and speaking French before I even went to school. It was fun. I enjoyed learning and I did think I was smart when I first went to school.

early days at the caravan

I remember only three things about school in Calverton –  I remember walking to school in a ‘pea-soup-er’ fog, all linking arms and feeling our way along the mesh fence; I remember my sister fighting me in the playground and I remember having to stand on a chair and spell ‘‘nurse’’, which was easy for me, but I went so red in the face that I could see my nose glowing and it made my eyes smart.

When eventually I went to University, my very first essay was entitled “My education so far.” I was astounded at how little I could actually remember of those ‘formative years’ at school, and at how much more I had learned at home. It had a profound affect on my approach to teaching primary school children thereafter. What was significant for me was that I loved learning and it made me feel good about myself. It was something I could do, something I could get right and be praised for and I quickly learned to appreciate that praise, and to rely on it for my growth. I am very grateful that I had that foundation of learning.

Although my memory of primary school is scant and was later much overshadowed by home events and situations, school was my sanctuary, and my joyful world. I was content, because I worked hard and my best was good enough to please my teachers; they at least, actually seemed to like me.

I was sad when home time came. I hated weekends and dreaded holidays.

***

Chapter 3

Mum is home and I get the impression that the journey was a bit of  “this and that, and some of the others as well”.

“Can I do anything?” she pleads.

I’ve rescued all the tiny soldiers from the dining room floor – the ones that didn’t stick in my toes this morning – and given Mammy the big broom.

She has been sweeping for ages and looks happy with herself. Now Conor is entertaining her with more of his guessing games.

I finally cleaned the kitchen windows, but I was watching the birds as I put the windowsill bits back and cut my finger on a piece of my stained glass. That brought me sharply back to reality. The birds are so fascinating though. The other day I took a series of photographs of a Song Thrush who was smashing a snail against small stones on the floor and eating the insides. It wasn’t in the least bothered by me. I’d hoped to hear its song, now that I could identify it in front of me, but it was too busy to sing.

I wish I could remember all the funny things that Mammy says. The twists and turns of phrase are so amusing in themselves, but somehow I lose them immediately. I can never remember jokes either.

The only one I can remember just now is a bath time one, but we have similar variations on that theme every bath time.

“How can water be so wet?”

I keep saying that I must get her a rubber duck – although I guess they’re made of plastic now. She asks for one every time she’s in the bath.

“Where’s my duggy thingy? You know what I mean!” she laughs.

***

Our weekend away was fantastic; the welcome, the host, the house, and the grounds of Sledmere were all superb. The inn was cozy and friendly, and to go to Mass in the family chapel was a very special end to the occasion. Now at last I can identify the rooms depicted in the painting we have in our ‘drawing room’, and Conor was delighted to go back to school with the tour-guide to the house and spout about his posh ‘relatives in law’. 

It is taking some concentration, but I am slowly managing to piece together the whys and wherefores of the family that I have become one with.

I had over 24 hours without Mammy and it was good for us all, I think. She looked so pleased to see Conor and I coming to collect her again and she was in great form.

Saturday morning hadn’t been quite so easy – her things were packed and she had been told several times about the overnight stay at the care-home and seemed fine, but clearly something was happening and causing her anxiety. I went to give her a bath, this time using the new seat that the Occupational Therapist had got for Mum’s safety. Anyway, we had the rubber duck banter and she got in – rather, she squeezed herself into the space in the water, to the back of the seat.  Suit yourself I mused, removing the seat.

She enjoys the hair-washing/head massage now: “Have you done this before?” “Who does yours?” are typical comments.

Well, all was going swimmingly, as they say, until it was time to get out. We have had some problems at this point before, which is why we were experimenting with the bath seat, but this day was different. “There’s nothing to hold on to” is a frequent complaint…

After fifteen minutes, I suggested finding a handsome fireman –  or two –   to lighten the tone, but it didn’t help. I tried very simple instructions. I left the room in case I was intimidating her (because she could never do things when Daddy was watching her and because I was becoming a little frustrated too). I had long since let the water out of the equation, but after about forty minutes, I knelt down, apologized, hugged her and prayed. Then I turned her knees to the side and this time she let me lead her up and out of the bath. Phew.

Shower or bath-seat from now on.

***

Another busy morning: the O.T. came to go through the getting dressed routine with Mammy, and to see if she had any new ideas to make life easier for her. I had to remember to have her come down for breakfast in her dressing gown, then the O.T. took Mum back upstairs. I took Conor to school and came back to find Mum dressed and ready to go to the bathroom for a wash. Then I got the call from the ‘grab-rail’ people to ask could they come this morning – I suggested 10:30am, thinking I’d be back by then. Mum goes to another Day Centre on Wednesdays – just a ten minute walk in the other direction. The O.T. had been very thorough and has a lovely way about her. She nods as she speaks and you find yourself nodding and agreeing with everything she says, whilst also feeling very much affirmed. We seem to be doing everything as well as we can with the morning routine, but we are going to have to think about some way for Mum to know whether or not it’s time to get up of a morning, because it does stress her out. One idea would be to have a big clock face with just one hand and clear numbers saying ‘1-ish’, ‘2-ish’ etc. Maybe I should design one and patent it?

This morning we had another “long night” with “so many things happening…people and things moving about all over the place, so I just stayed there in bed!” Not a good night for Mum and then the trauma of having a stranger go through the getting dressed scenario with you – albeit a lovely stranger. Poor Mum was looking rather jaded. Then, I had to rush her off the loo and trot down to the Day-Centre, before the man from the ‘grab-rails’ was due. – I had left a note to say I’d be ‘just a jiffy’ – and he was there waiting when I got back, puffing and panting from my little run.

Anyway, that’s another few jobs done. The O.T. will be back next week to see if she can be more successful than I was about some artistic endeavours with Mum.

Mum used to paint in the Orkney Isles.

I had ordered a monthly ‘Watercolour’ magazine for her, years ago, and sent her a posh set of watercolour paints and pencils one Christmas. Later she also did an evening course in Stromness with a  good friend called Tony. I have a few of the sketches and small paintings that she did, but it seems she was reluctant to have an audience whilst working, and so did very little during the actual lessons.

I understand that feeling. I really dislike anybody watching me work, at all, even in the garden or the kitchen and definitely not when being artistic. I never got used to a grown-up audience whilst teaching either.

So I don’t know how successful this planned crafty exercise will be. The last time I tried with Mum, I gave her a large sheet of white paper and put four bright colours on a palette and left a choice of big and small brushes. We talked it through and then I left her to it. She produced two small squiggly lines and a lot of disquiet within herself, so I abandoned that. But she does like the idea of trying again, so we will.

I was struck by Mum’s comment today as I rushed her down to the Day-Centre:-

“Thank you, Dawn,” she said, giving my hand a little squeeze. “You are very patient…I used to think I was patient, but you are much more patient…”

Thinking about how badly I’d coped with the last two days, I could only say, “I’m glad you think so, but I think I need to be more patient than I am. Thank you, Mammy.”

It must be so difficult for her. She was so happy in her independent world on the island (Graemsay): gardening;  knitting (she once had her own knitting business and label – ‘ORKNIT’); building dry-stone walls; spending time with her friends, singing and playing guitar.

mum running the post office on Graemsay

22 years ago she was running a clothes shop here in Nottingham and only 5 years ago she was managing the Post Office on Graemsay. Of course meanwhile she also had had a family to bring up – and I suppose she did her best at that, even if the result was not too good.

And now she can do so little for herself.

She has good days and bad days. I’m just glad she has some good days.