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.

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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

***

Liebster Award

Thank you to Perth Girl for nominating me for the Liebster award. I’m not sure what to do, so I’m following the instructions on your site… It’s all very mysterious but very exciting for a term-time early Monday morning. I think this is a very special Aussie honour.

As I look more closely, I see there is quite a bit of work to do to accept this award in the spirit in which it is given, so I’ll have to attend to it later.

I follow Perth Girl’s blogs because they reflect a real Christian life and are full of common-sense, humour, compassion and hope in day-to-day modern living (with an Aussie flavour 😀 ).

The Liebster Award is internet based and given by bloggers to fellow bloggers. The idea is to help connect with and support other bloggers.

The Rules:

1. Thank the blogger who nominated you.

2. Share 11 facts about yourself.

3. Answer the 11 questions the blogger
asked you.

4. Nominate 11 bloggers and make them happy!

5. Make up to 11 questions for your nominees to answer.

6. Notify your 11 nominees.

11 facts about myself

  1. I ‘m a child of God
  2. Some days my name is Mammy
  3. Some days I’m Nana-D
  4. Sometimes I’m Aunty Beany
  5. Some days I’m “Miss!”
  6. I’m a sister and a friend
  7. I don’t have a TV, but I watch lots of DVDs
  8. I love other people’s stories – hearing, reading and watching them
  9. I write all the time to try to hold my thoughts still
  10. I like walking and exploring and playing with children
  11. I love words – in any language and none – I called my friend a Brexpert this morning and myself a lexpert. A child drew me a neepo later at preschool.

Perth Girl’s questions to me are:

  • Describe yourself in 3 words? Spirit, Body, Mind
  • What is the hardest lesson you have learned? Saying No
  • If you could leave one thing behind that people will remember you by, what would that be? Encouragement
  • Name one book you have read more than once? Where The Wild Things Are by Maurice Sendac
  • Have you ever conquered a fear? Every day, but I haven’t killed them yet.
  • What do you wish you knew more about? The Kingdom/ Heart of God
  • What has been the most unexpected thing you have come across in your blogging journey? This Liebster Award and all the questions
  • What is something you think everyone should do at least once in their life? Grow a fruit or vegetable from seed and eat the harvest
  • Road trip or Train trip? Train
  • Favourite Tv show, ever? N/A
  • What is the best advice you ever received? Don’t judge a man until you’ve walked a mile in his moccasins- (because by then you’ll be a mile away and you’ll still have his shoes! 😀 )

My nominees are: ( I hope I can find 11 – sorry, but I’m struggling to find 11 who have fewer than 200 followers…)

https://medusamoon.wordpress.com/

https://denisehardy.wordpress.com/

https://carriersofhope.com/

https://marihowardauthor.wordpress.com/

My questions to my nominees are:

1 – Do you prefer writing or speaking?

2 – What thoughts get you up in the morning?

3- What’s your favourite quote?

4 – How many names do you have and which is your favourite?

5 – What do you like most about yourself?

6 – Where is your favourite place in the world?

7 – if you could change something in the world, what would it be?

8 – what is your favourite film?

9 – what is your favourite story?

10 – If you could be an animal for a day, what would it be?

11 – Who are your heroes?

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 Eleven

Chapter 8

Happily we now have her EEG appointment, for the 20th of this month (EEG is Electroencephalograph, which is a test to record the electrical impulses that the brain produces whilst sending and receiving messages from the body.) Basically they want to do a ‘sleep deprived EEG’, which means keeping Mammy up all night before the test. In recent weeks, after dinner in the evenings, Mum becomes overwhelmed with tiredness and goes almost immediately to bed. Sometimes she wants a nap in the daytime as well and becomes panicky and tearful if I don’t suggest it. The hospital say I should do my best and I do want to know what is causing the seizures. The Consultant Neurologist called them ‘frontal lobe seizures with a quick recovery’.

I let Mum have a relaxing day and tried to keep her buoyant and gently entertained (good old Conor) and after dinner, I went to get some sleep. Simon offered to stay up with Mum and he let me sleep until 3am. I took over, made coffee, showered us both, had breakfast and listened to some more dancing music. The taxi came at 7.45 and I felt very pleased with our success – a real joint effort for this one.

The nurses in Neurophysiology measured Mum’s head, making little crayon marks on her scalp. They had asked all necessary questions and were good at entertaining Mum, so after watching them sticking the little electrodes to her head I left her, looking like an experimental hedgehog, in their capable hands. When I went back, she was already in the waiting room, looking rather disoriented but free to go. Our doctor should get a report sent to them in 3-4weeks.

***

It’s the 3rd of October today and Mum and I are both miserable and tearful. Since the Summer I have not felt my usual bounce and optimism. I need some more help.

Mum is finding ordinary things harder than ever now. The O.T. says I should encourage Mum’s independence, but more often than not the getting-dressed routine has failed. She won’t ask for help or admit that she needs it when I offer, so I have to take control and take over. She stares at the walls and follows me around, so that to get on I have to constantly say, “Excuse me, Mammy” or physically move her to one side. She doesn’t sit down for long. Her noise sensitivity is becoming more severe – yesterday I put some music on whilst I prepared dinner in the kitchen. She hid in the toilet, but couldn’t say ‘the music is too loud.’ She won’t say if she’s cold or hungry either, just looks at me with a hurt expression whilst I guess. Increasingly the answer to any question is,

I don’t know!”

Do you want tea or coffee?

“I don’t know”

Why are you crying, mammy?

“I don’t know”

Shall we go out?

“I don’t know”

Yesterday Mum had another activity-packed day and again she told her sister that she doesn’t do anything, so I bellowed into the phone that she can’t remember what she has done. Then at prayer time, when invited to say her prayer, she complained, “Not really, I’ve done nothing.”

“Pardon?”

“Well, I don’t do anything all day!”

I wasn’t very nice and said how I spend my days trying to keep her entertained and happy – for what? I might as well not bother. Conor was angry with me:

“It’s not her fault she forgets. She enjoys herself at the time. And she should be here; she entertains me.”

Stress, depression, frustration, ulcers and now ‘guilt’ to boot. I knew I was being cruel. I want her to wake up. Conor is right. My selfishness is my fault.

A couple of days ago she was crying that she just wants to be normal. It hurts her that she can’t do ordinary things. Picking up a cup, using a knife and fork – these things are often just so difficult for her. She perseveres when it’s food, but not for clothes or for anything else.

I get frustrated because I can’t make her better or, worst of all, I can’t even make her feel better.

***

That night I went to my first of a series of eight ‘Carers’ group’ meetings. We all had to introduce ourselves, saying who we were caring for, something about the circumstances and what we found most difficult. I kept mine brief and vaguely humorous, but afterwards a lady told me that of all the stories, she found mine the most touching. She felt that having a young family at home as well was too hard and that she was thankful that her children had not had to witness the misery of dementia. The stories were all very different and represented a whole range of caring for spouse or parent – some at home, some hospitalised; a whole range of ages, but all had a fairly recent diagnosis of dementia. The descriptions of the ways in which the dementia presented itself were unique to each family, but very recognisable. There was a hum of empathy and agreement as the listeners recognised behaviours, symptoms and traits that they too had had had to deal with in some form.

***

Last night was my second ‘Carer’s Group’ meeting. The speaker was good at his job, but I found the content repetitive and unhelpful, as I had already spent the last 10 months battling to come to grips with much of the system. I suppose I was reassured that I had left no stone unturned.

I have tried extra hard again this week to be patient and encourage conversation. The trouble is that she doesn’t seem to enjoy her own company, whilst I love quiet time and reflection. She doesn’t actually know what she wants to do. I know she likes walking, visiting, eating and drinking, music and some occasional TV. If I suggest any one of these activities, she will invariably say “Yes” and, as Conor says, she will enjoy it at the time.

Mums ‘prayers’ have been an interesting reflection of her emotional state over these months. When she first arrived with us, she would say she couldn’t find words to pray and would fluster and stammer. After a couple of months her ‘prayers’ began to express how lucky she felt to be living with us; how she loves us very much. By August the ‘prayer’ had become a self put-down – how she hadn’t done well, had been selfish or mardy and how she would try harder tomorrow. I always feel the need to address these negative comments afterwards and remind her of the good things she has done that day. These last three weeks her ‘prayer’ has been more of an expression of her boredom and frustration of how useless and under-stimulated she feels.

I have inhaled the roses and the chilly warmth of Autumn earth and dancing red leaves.

I am looking at my life to see what would enrich me, make me more alive and fruitful and a better person for us all to live with. I was breaking off the dead geranium flowers, reflecting on how they have flowered fantastically since I planted them out in the spring. I wondered at how difficult it is for me to discard the unfruitful parts of my life, how I try to carry all the dross and still expect to flower. I need to nourish my own soil and do some overdue pruning.

***

I took the boys to ‘Goose Fair’, whilst Simon stayed at home with Mum. The fair was fun and when the boys felt sufficiently dizzy and sick, we began the long walk home. I took them on a trip down my ‘Memory Lane’. I showed them my old College, then we walked through Sherwood, where Debbie and I had tried some of our early financial enterprises, selling stuff from Mum’s shop and setting up an egg-delivery round. From the same era, we explored Woodthorpe Park, which had us occupied for hundreds of hours as kids. We passed the shop where I had done my paper-rounds and Saturday job, past my old house on Porchester Road, smiled fondly at Pa’s, where the boys used to stay when they were little. It took us two and a half-hours to explore and I came home feeling quite disorientated. Such a lot of memories. Part of me is seeking memories, seeking to make sense of, and celebrate, the whole jigsaw of my life.

***

On Sunday I told Debbie how things are for Mum and she was very supportive. She wants to help, but can’t. She may be able to offer us some support before Christmas. She will back me and help me if I choose to put Mum into a home. I hate the thought of doing it, even if I believe that it would be better for Mum. I spoke to the boys about it too, explaining that the carers in Homes have more energy, because they do 8 hours a day for 6 days, not 24/7. Also she would have more company and we could still bring her here to play, but we wouldn’t be tied and she might get less bored. Conor is fabulous with her and I acknowledged that. I thought Conor would be angry with me, but he seemed very understanding. He would miss her. He’s finally got one Nana at last and she might have to go away again. But at least she wouldn’t be a thousand miles away in Orkney.

I’m afraid that Mammy will be angry with me if I make her go.

I’m sure I won’t be the first person to feel they have failed a loved one, when they finally admit to not being able to cope alone any more. I don’t know when I’ll do it. I’m not desperate yet.

***

Today I told my therapist about my relationship with depression and sexuality and about the fire that scarred my mother. I know how terrifying it was to live with my father and how much Mammy must be still emotionally, as well as physically, scarred from those 32 years. Her fear and love of him made her incapable of responding rationally and leaving. She protected him by her lies and secrecy and therefore made external help impossible. She was trapped. She is still trapped.

***

It is a beautiful ‘All Saint’s Day’, with cool sunshine and fiery leaves whirling in the breeze. The last of our apples are lying in the golden grass and the still unripe corncobs are rustling in the wind. Yesterday I had four hours to myself. Nobody in the house but me. I prayed, cried, read, did some correspondence and sanded and waxed another shelf. It was great.

Last week Mum was in ‘Respite’, whilst we all went away. Simon took Mum to the home this time, because Mum doesn’t seem to get as upset with other people as she does with me. But I was glad to come home. Simon and I haven’t been so close since the summer; since the last miscarriage. Whether it is due to his depression, mine or Mum’s, I don’t know. Perhaps it’s a lack of time alone together, but it’s been an uphill struggle. Simon is going off walking with friends for the next 3 days, so I hope it refreshes him.

Mum was very well after her respite. Her ‘prayers’ on Saturday had returned to how wonderful we all were and how much she loved us. By Monday night, however, it was back to how she ‘hadn’t tried hard enough’ and was ‘sorry for being mardy’, and last night we were right back to how she hadn’t ‘done anything at all. Not a thing all day’.

I have spoken to Social Services. They have put Mum’s name on the long waiting-list in ‘Broad Glade’, where she has been staying for ‘respite’. It is also where ‘The Broad Glade Day Centre’ is, so she is well known there already…There is another place, even closer, that I should explore, but haven’t yet.

I know Mammy has every right to have her needs and wishes met, but what should happen when those needs and wishes conflict with the needs and wishes of those around her, or what if they are not good for her? I guess I’m not sure quite how responsible I should be for her every happiness, if it conflicts with our well being. I know that most of my life nowadays is about keeping Mammy happy, but it isn’t her fault. It might be easier if I looked at it all differently, but I can only see things Dawn’s way.

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 Eight

The school fair on Friday was not good for Mum. She couldn’t see anything on the stalls, the children were moving around too fast, the sun was too hot and she couldn’t hold the hot-dog properly and inevitably lost the sausage on the floor. I was partly to blame, as I was still agitated.

Mum had a great day out with Debbie yesterday and even though she has no idea where she went or who with, she enjoyed doing something different. So did I. It was good knowing that someone else was caring for Mum and happy to do so. It felt strange being in the house at the boys’ dinnertime though and Mum not being there.

On the morning of our friend’s wedding, I found Mum in her favourite place – the downstairs loo. She sometimes goes in there just to ‘hang about’. It was such a funny sight. She knew something wasn’t quite right, which must have been why she was hiding and looking at me with a ‘naughty girl’ kind of apology. She had put on her stripy blouse, but only fastened the top button; she had a black sock on one foot and a black shoe on the other; and nothing else – no pants or anything. Fortunately she was able to laugh with me as I inquired as to whether this was her ‘sexy get-up’ for the wedding. Suddenly she became very upset and scared again. Her inability to perform what her mind envisions sometimes bothers her so much. The frustration then cripples her and it’s a downward spiral. I can only hug and reassure and blame the ‘whatever it is’ dementia and tell her it’s not her fault.

She cries at weddings too and, although she didn’t know who was getting married, this was no exception. Mum was beaming. I put her in the top and suit jacket that I got her for my wedding. Taking Mum to get our food at the Reception was another mistake I’ll not make twice. There was so much choice and people busy foraging, that it was enough for Mammy to just to hang on to me and follow me around the table, whilst I filled our plates. Then the disco set themselves up and Mum panicked. It was too loud again, so we searched for a quieter place for her to sit. She ended up in the cloakroom, which was a shame, because she loves dancing so much. We were very late home.

Fortunately the First Holy Communions were not until 12noon the following day. It was very special for me to witness my Goddaughter, Violet, and Bruno, receive the Eucharist for the very first time. There were some Italian guests at the house party and for Mum the treat seemed to be one of the Italians himself and she became so amazingly animated and sociable, completely unlike the Mum who had arrived an hour earlier.

Later that evening, at home with two exhausted boys, Mammy asked me, “Did you have a good day? Did you do something nice?” – as if we had been in different parts of the world. I told her that we had just spent the entire weekend together – at a Wedding and at a First Holy Communion celebration. She looked at me sceptically and then conceded, “I must have got it wrong again then?”

I did press, but she couldn’t tell me what she thought she had done instead.

***

I’m feeling very anxious – about going to Jersey, about Mammy being in Broad Glade and about Ana and the boys and all the arrangements necessary. And I suspect I am pregnant. On Saturday it is the 07/07/07, and that was our lost baby’s due date. Can I do it this time? Will I manage to care for Mum and have a baby?

***

I’m back after a great weekend in Jersey. We managed to walk our socks off and eat the most delicious seafood. I’ve taken so many photographs of unusual petals, shrubs and other anomalies. One of my favourites is called ‘Agapanthus’. I found out the name from the taxi driver en route to the airport and bought one. I wonder will it grow in Nottingham? The pregnancy test confirmed my suspicions. Simon knew by then and is equally excited and nervous again. I spoke to the midwife yesterday and they’ve booked me for an 8-week scan on 6th August.

Mammy was pleased to see us. Conor and I could see her sitting in a lounge with two other ladies – all equally motionless and grey. Conor stuck his head in front of her, with an “Hello Nana” and she transformed magically into a bouncy, smiley and colourful young ‘Nana’.

Ohhh, I didn’t know you were coming. It’s so lovely to see you.” Up she jumped then to give him a hug and to find me.

The man on reception took us to get her things and as we searched the whole ward for her medication, there was not another member of staff to be seen. It makes me very sad, but grateful that I have not yet been forced by circumstances – as many are – to put Mum into a home permanently.

Debbie repeatedly commented on how much Mum has improved since she saw her even at Christmas. She also sent me a text, after dropping Mum off at the respite home on Friday, saying that she really appreciates all we are doing for Mum and apologised for ‘the hard time’ she had given us initially. I really did appreciate that.

***

Mum dressed herself this morning – only the trousers were wrong today and they look so funny: like a little elephant with it’s floppy ears (pockets inside out). She wished her breakfast a ‘good morning’ and when I mentioned ‘having a bath’, she asked me, “Which one are we going to today?” She loves having her head and back scratched; then I sorted her crabby foot and nails and she looked fresh and comfortably pampered.

I really do enjoy her more when I know I’m going to have a couple of hours to myself.

***

Walking to pick Conor up from school, past all these separate other beings, I felt completely ‘spaced out’. It is like continuing a long experience of years of being alone; day dreaming, anxious, hiding, hoping I won’t be noticed – a numbness, only half alive, yet simultaneously tingling with sensation and nerves everywhere, too painfully alive. I think it was a coping strategy, when extremely scared or alone as a child. I lived in my own intense little world a lot, usually in dread of what might be next.

***

Last night as Mum joined in with prayers she implied that she had been thinking a lot about everything and trying to get everything in good order, and although she had done well, she wanted help to do even better. I didn’t ask her what she had been thinking so much about, because her prayer is not to me, but it might explain why she was so much ‘‘easier’’ for me yesterday?

I had a little reminisce this morning with Mum and Conor, because next Tuesday is the All Hallows’ performance of “Joseph and his Technicolor Dream-Coat”. I described to them how at Junior school, I practised for weeks for that same concert, but in the end I was not allowed to be in the performance, because “They…” I said to Conor, whilst waving an accusing finger at Mum… “wouldn’t let me do anything after school.”

***

I always had to be home 10 minutes after the school bell had gone. We had chores to do at home – cleaning, shopping, laundry and, often, cooking the tea.

We had left the caravan when I was 8 years old and moved into a large, 3-bedroom Victorian house on Porchester Road. There was a cellar and a secret corridor between the hallway and the dining room, which fired our imagination and was an inexhaustible catalyst for games. There were also two sitting rooms and a crooked kitchen, with a twin-tub and a mangle. Daddy decorated the rooms with multicoloured spray-paints and lots of different wallpapers, and Mum painted the moulded patterns on the doors and filled the house with sparkly brasses and knick-knacks.

I would often sit in my room in Winter, to do my homework, wearing hat, scarf, coat and gloves. The windows would have frosted leaf patterns all over the insides, and I could see each nervous morning breath shiver around my bed. We never had hot running water, except for the bath every fortnight, which we shared one after another. Other jobs were done by boiling kettles and pots on the stove. Water was never wasted.

Mum looked after our basic needs for food, clothes and a roof over head and she tried to make sure that we were washed and schooled, but she couldn’t provide much emotional support and was always more distant than I would have liked. I would sometimes try to trick her into kissing me goodnight by pretending to whisper something and then grabbing her round the neck. Unfortunately, she would pull away from me irritated and leaving me feeling even worse.

I was envious of Debbie, being the Elder of us. She seemed to have the privileges and the space and apparently never got the abuse that I suffered. Dad always said that she was like him and that I was too much like Mammy and drove him mad.

The Summer of 1972, Mum bought a shop. It was a ‘drapers’, called ‘Nine till Five’. She also did dressmaking and repairs and I used to help make soft toys to sell at Easter and Christmas. I knew that it was good for us to have the shop, because often we had no income at all. But I hated her being away all day and, because Daddy was super-sensitive to noise, I would spend hours picking bits out of the rugs, to avoid the noise of the sweeper. Most of all, I hated being alone in the house with my Dad.

One day, when I got home from primary school, Dad was waiting with an important question to put to me and Debbie, that we would have to answer before Mum got home from the shop. He and Mammy were going to separate, he said, and he needed to know which of us was going to stay with him and which of us with Mum. She had apparently done something ‘unforgivable’, but he wouldn’t divulge. He left Debbie and I to argue this ‘Catch 22’, but we decided that we girls would not be separated. We were scared to tell him the truth – which was that neither of us wanted to go with him. Eventually, at the tortuous eleventh hour, we said that we would go with Mum or run away together and go into a home instead, but we never heard anything more about ‘the separation’ again. Dad never forgot our response though.

Safety and protection were not rights that I was to know at home as a child. Mum never had them either during her married life and I believe that must account for some of the fear and anxiety that she experiences now.

School was my refuge and a place where I did feel safe and valued. It was the place where Dawn was accepted and encouraged and nurtured. I dreaded going home. I hated his torturous speeches. I hated what he put me through and the unknown waiting…

I was also very aware of our financial poverty. I wore clothes that were not only hand-me-downs, but had been bought in jumble sales, altered for my sister and then passed on to me. I was embarrassed by my outgrown rags and admired the pretty girls with their fancy clothes.

I saved birthday money and wages from my paper-round and eventually bought myself a second-hand bike. I loved my £14 bike and would play out on it after tea and ride out to the countryside in the holidays.

***

When I was telling these stories at breakfast, Mammy was smiling and laughing as if I was talking about someone else. I suppose I was. She was no more to blame then for making my life difficult, as she is now for what she can or can’t do today.

Week Seven

At the age of 17, on a beautiful August day my lovely Nana finally gave in to the cancer that had riddled her body. I was devastated. Dad took Mum to Nana’s house and then went to his yard, a motor- mechanics’ business, which he had inherited from his dad a couple of years earlier. They had left me at home to mourn in peace. I took my one cassette tape (Fleetwood Mac) out into the garden and lay in the sun, crying and thinking about Mum and Nana. After what seemed like several hours, I heard a dreadful noise. It was Dad’s car returning. My stomach in knots again I waited, hoping he’d go to bed and leave me in the garden. He banged on the kitchen window and beckoned me in. What followed is unclear, like a storm. He was ranting about me being a whore to the neighbours, disrespectful to my Nana and a nasty b***. He whacked me repeatedly around the head and kicked me to the floor, knocking the ironing board and other furniture flying. He was mad. Arms and legs pumping, he screamed at me to get out before he killed me.

I knew he meant it and how I got to the front door and got out, I don’t know. I ran as fast as I could, shaking and crying until I found myself near Isabelle’s house. She was away on holiday with her mother, but her Dad was at home. I stood sobbing on his doorstep, before plucking up the courage to knock. He was very good to me and offered me sanctuary. Later that day, Mum found me and forced me to go back home, saying that she was not going to lose her mother and her daughter the same day. I made her promise that Daddy would not touch me again. I don’t think he did. He had very little to do with me after that.

When Isabelle returned, she was furious and begged me to come to live with her. Her Dad (Mr K.) was happy with the idea and we devised a marvelous plan: one day a friend with a car came to my house when the coast was clear. We quickly loaded all my belongings and took them to Isabelle’s house. Then I walked to Mum’s shop, to give her the key and tell her what I thought she should know. It didn’t go as planned. I’m not sure how I expressed what had been happening all those years, but now it was Mum’s turn to be angry and thump me. She called me a deceitful liar, amongst other things, saying she had never liked me and threatened that if I didn’t have everything back at home by the time Dad got home, then Dad would come and kill Mr. K., as well as us. I called Isabelle and told her that I had to go back, having no idea when Dad would return. We no longer had the friend, or his Mini, so Isabelle and I legged it back and forth with box after box, until it was all back in order.

For the next few months at home, Mum was in charge and I had certain freedoms. At weekends I was allowed to stay at Isabelle’s house. I did as many of those things that young girls are not supposed to do. We rarely stayed in at Isabelle’s house, but her Dad was fabulous. She could phone him on a Sunday morning and he would always come and fetch us, from wherever we had stayed the night. One such Sunday morning, between Christmas Day and New Year’s Day, Mum saw Mr. K. drive up the road with an empty van and return with us party girls about 20 minutes later. She put two and two together and made ten, deciding that we were prostitutes, drug dealers and whatever else you think of, and that she didn’t want me in her house anymore.

She had formally disowned me. I was no longer her daughter, she no longer my mother. She typed out a contract for Mr. K. to sign (as I was not yet 18), giving him full parental rights over me. Mr. K. was happy to sign it.

That was a New Year to rejoice! How happy I was to leave. It hurt to have her disown me though.

She didn’t want to face reality. Even when Dad died, the first thing she said to me – when I rushed all the way to Orkney, from London, with my baby Josh was:

“I don’t want to hear anything bad about your Dad, now or ever. I want to remember the man I loved.”

Doesn’t that say it all?

When he was gone, she slowly lost a grip on how to ‘seem to be normal’ and then lost all the secrets and most of the memories. I can’t blame her for wanting to forget though.

***

Chapter 5

I have been extra busy and a little ‘down-in-the-dumps’, with little irritations making me more tired than usual: my eyes and ears are sore, the head aches a lot again, the back is giving me ‘jip’ and, due to decorating, the skin on my hands is cracked and stings.

On Tuesday I had to take Conor to the West Hospital – this time to Orthodontics. Simon had to take the day off work, so that Mum could have her ‘Befriender’ and ‘Sitting Service’, which are both on Tuesdays. The ‘Befriending scheme’ is a service provided by volunteers and organised by the Alzheimer’s Society. Simply put, a volunteer will agree to visit the ‘service user’ at a mutually convenient time each week and ‘befriend’ them. ‘The Sitting Service’ is a more specialist voluntary organisation, run in Nottinghamshire by ‘Trent Crossroads’. These workers have some training and are paid by the Council, but they perform a similar task to the Befriender.

(See Appendix 2: ‘Helpful Organisations’)

It was a bit squirmy in orthodontics, when they put the green putty in to make the shape – and fitting the tight metal rings was painful, but the rest of the day was great. They are making him a ‘palatal arch’ for when they extract his molars. Poor Conor has to have 8 teeth pulled out in July and he is going to need a general anaesthetic – he’s still my baby and I don’t like the idea at all. I hope he gets to like soup. We didn’t get back until three. Mum had had a good day so far and remembered having ‘something yummy’ to drink in a café with her ‘Befriender’.

The Sitting Service volunteer came then, and Conor and I went for his last swimming lesson.

Interesting things happen when we become hormonal. Apart from the physical bits being more sensitive, the nerves cut like knives. As for making decisions – I become almost paralysed, as if facing a life-changing choice, like: shall I make a pot of tea now, or when I’ve finished hanging the washing? And I keep banging into things.

Yesterday and today, in amongst the decorating and gardening, I’ve been sewing up ties, cutting Mum’s hair, doing HMRC assessments, ordering a disability badge for the car and managed some prayer time. Feeling satisfied, but there’s such a lot planned, that I think I’m feeling some anxiety too. Simon’s friend is staying over tomorrow before his wedding on Saturday. Mum is coming with us to this wedding, so we all need dressing up and I have to drive. It is not easy to get ‘babysitters’ for people like Mum and as we are not sleeping away, Mum should be able to handle it.

Bruno’s and Violet’s First Holy Communion is on Sunday, with a party to follow. Debbie is coming on Tuesday, until…? On Wednesday: the Pension Credit People are coming AGAIN to ask more questions and hopefully get these forms finished… Ana is coming on Thursday night, and on Friday Simon and I fly out to Jersey, leaving Isabelle and Ana to look after the boys and deliver Mum to Broad Glade. Ana was one of our many fantastic Au-pairs that we had whilst I was working and living in London. She was our Au-pair for two years and then later lodged with us for another year before we left London. She still works in London and comes to visit us for holidays.

I am really looking forward to a break in Jersey with Simon. It will be our first time away – just the two of us – since our honeymoon.

Yesterday we went to see Mum’s dementia consultant, who I understand to be the ‘top dog’ at the St Peter’s Unit Unit. She didn’t keep us long, but what she said has knocked me for six. The very thorough O.T. had given her notes to the consultant, who, on reading them, doesn’t feel that Mum is presenting Alzheimer’s at all.

She might not have Alzheimer’s?

She said that the report suggests ‘frontal lobe’ deterioration, which is apparently not consistent with Alzheimer’s. ‘Frontal lobe’, of course, is what the ‘epilepsy specialist’ was talking about too. So if Mum is having ‘frontal lobe seizures’, would that not cause ‘frontal lobe deterioration’?

I didn’t ask these questions. The consultant wants to refer Mum to another neurology specialist for a second opinion. How will I feel, if I discover that Mum has had epilepsy all this time, which, had it been diagnosed and treated correctly, might not have resulted in this incapacitating dementia? Could treatment now halt or reverse the deterioration? Does that mean Debbie and I probably haven’t inherited Alzheimer’s? I guess some of these questions will be answered in time. Meanwhile we await the ‘brain-wave test’ (EEG) and the neurologist’s ‘2nd opinion.’

It does offer some hope though, as well as questions.

Mum had another ‘little episode’ on Monday. She didn’t faint this time, but she ‘blanked’ and her eyes rolled for a while whilst she shook. Her hands and skin look white and puffy and she is coughing again quite a lot. The GP must be sick of us by now, but we visited her again to formally get the results of all the recent tests – chest X-ray and blood tests. All of it is clear.

But the cough is still a big problem to Mum. We now have 2 more avenues to explore: asthma or possibly something to do with ‘reflux’ from the oesophagus into the lungs.

The dementia consultant has just phoned me. Her ears must have been burning. Like many of the professionals involved with Mum, she has shown genuine concern for my ‘state’ as well. The epilepsy specialist that is arranging the EEG has told her of her own doubts about the Alzheimer’s, but the other specialist wants to keep the case herself. According to the consultant, the question of type of dementia, is ‘all very academic’, compared to the day to day job of caring. Apparently in the 10% of dementia sufferers who have neither Alzheimer’s nor Vascular dementia, there is a relatively rare ‘frontal and temporal area’ dementia, which may present like Mum’s does. Anyway, the EEG should uncover more of this and I will see the epilepsy specialist to discuss findings in November. It seems a long way off. The consultant said it sounds like Mum is having chronic seizures, which prevents oxygen reaching the brain; so if it gets worse, medication for epilepsy would be better than whatever side-effects may result from the medication, but…It is very difficult watching everyone doing tests all the time, but nothing conclusive happening. I think we would all feel somehow ‘rewarded’ if even one test result would point to a definitive cause and a possible solution.

I know they are all doing their best. We all are.

I still wonder whether therapy for Mammy could be helpful. I did mention it to the consultant, that she has ‘had lots of bad stuff in her life’. She said something vague in response and I dropped it, but…

Week Six

Content Warning – contains descriptions of child abuse.

What to do with Mum is always such a challenge – particularly if I don’t know what I want to do myself.

We went out for a walk with the pretext of buying milk. Mammy was looking upset again. “I’m so scared,” she said “I can’t DO anything and I don’t know what’s going to happen.”

“It is scary, but you can walk and talk, sing and dance, eat and pray and you can love. That’s quite a lot of stuff that you can do well and I think it’s very important stuff. The other things we can help you with.”

Mammy certainly can dance – she does a very seductive, fun dance and can still jive. Once, they had an outing at the ‘Broad Glade Day Centre’ and Mum returned with a certificate for being ‘a beautiful dancer and a lovely presence on the stage’. She is happy when dancing – especially to rock ’n roll. She loves blue grass too. It always surprises me how deep into the soul music must go, as many people can forget their own name but still manage to sing-along to an old tune.

***

Today is Monday again and we’ve done the school run, had tea and a chat with Pat (we visit her on the way home several times a week), been up to ‘Take-a-Break’, done some shopping and assessed the growth (and the storm-damage) in the garden. The air smells fabulous today – like the air you smell when hill-walking: fresh green, muddy fragrances – full of warmth, heady-sweet privet, elder flower and promise somehow?

The O.T. is here now, doing an activity with my crafty mum. I’m trying not to listen, but it sounds like she’s taking some encouraging.

Yesterday I picked up a book and read the first chapter “What is Alzheimer’s disease”.

I must admit that I found this a little alarming:

“The form of Alzheimer’s disease that is definitely known to be passed on…in the genes, is extremely rare. It is very unlikely…unless close relatives have developed the disease below the age of 60…If your family does…you are only at risk if your mother or father developed it. If…you have a one in two chance of developing the disease…a genetic test … could be requested to confirm whether or not you do in fact have the gene…” (page 5) [Notes 1]

Now that’s not very encouraging. I will banish such thoughts. I have no intention of carrying or developing such a horrible disease. Nor Debbie.

It also says “Up to the age of 65, Alzheimer’s disease develops in only about one person in 1,000.” (Page 4)

One other fact that I found interesting, considering they seem to know so little about what actually causes the disease, was the description of what would be found in the brain of an Alzheimer’s sufferer at their post-mortem –

“…Diagnosis… usually depends on finding characteristic changes in the brain tissue…Spread throughout the brain…are deposits, or plaques, made up of an abnormal protein called beta amyloid. A further abnormality is the occurrence of tangles of twisted protein molecules within the nerve cells of the brain. Other features, also found in other dementias, are shrinkage of the brain and widespread death of cells.” (Page 3)

Another thing they find in post-mortems is a lack of acetylcholine – a neurotransmitter – in the brains of people who have had Alzheimer’s. That’s why they give the ‘Aricept’, I believe. But we don’t seem to know what causes all these proteins and plaques to develop.

The book also offers a rough guide to the likely progression of the disease, in terms of symptoms. They list ‘early’, ‘middle’ or ‘late symptoms’. Reading through them for a ‘best fit’ assessment myself, I can tick off everything in the ‘early’ and the ‘middle’ lists for Mum and even put hesitant ticks on half of the symptoms listed in ‘late symptoms’. (page 10) [Notes 1] – I have listed these stages in the Appendix [App.1]

So we’ve got more to look forward to yet. It is all quite vague though. The last time we were at the St Peter’s Wing, the doctor did a memory assessment of Mammy. She scored ‘9’ out of something, but apparently ‘less than 12’ (out of that same something) indicates a severe memory impairment. They asked lots of questions about what day, month, year, and season we are in and, mostly, she doesn’t have a clue. Personally, when my own routine is disturbed – e.g.: holidays – I don’t know what day it is either and I usually have to check what the date is now that I am not teaching.

And what does it really matter?

Some new and significant events do register and stay in her mind and recall though: last year when I told Mum that I was getting married, she consistently said she wanted to come. When it was arranged, apparently she told lots of people in Orkney and on the phone, that she was coming to my wedding. More recently in March, the tragic, accidental death of our dear friend, Roger, was an event she recalled frequently over the weeks until the funeral, which we were fortunate to be able to attend. I suppose the fact that these events were so significant was the main point.

Anyway, the doctors here figure that the ‘Aricept’ – which was supposed to “reduce the breakdown of acetylcholine in the brain” – doesn’t help with severe Alzheimer’s disease anyway.

I looked at ‘page 39’, to see what they say about the genetic test for family members. Apparently it is a simple blood test to see whether or not I could be carrying the gene that has caused Alzheimer’s disease in my mother. I probably won’t do it though. I want to live in faith in God, not under a medical prognosis. But I might try some vitamin B12 and B1 supplements, which are supposed to help keep the brain healthy anyway.

This is all technical stuff, but it is very interesting and worth knowing. I know what to pray against for myself and my boys too. (And for my sister and her children.)

The Alzheimer’s website has a simple checklist:

The seven warning signs of Alzheimer’s disease are:

1. Asking the same question over and over again.

1. Asking the same question over and over again.

1. Asking the same question over and over again.

2. Repeating the same story, word for word, again and again.

3. Forgetting how to cook, or how to make repairs, or how to play cards — activities that were previously done with ease and regularity.

4. Losing one’s ability to pay bills or balance one’s chequebook.

5. Getting lost in familiar surroundings, or misplacing household objects.

6. Neglecting to bathe, or wearing the same clothes over again, while insisting that they have taken a bath or that their clothes are still clean.

7. Relying on someone else, such as a spouse, to make decisions or answer questions they previously would have handled themselves.

[See Appendix 2: useful websites.]

***

My sister, Debbie, will be coming to Nottingham next Tuesday. Debbie and I are not alike. We see the world from very different perspectives. I haven’t seen her since Christmas, just before Simon and I decided that Mum would not be returning to Orkney. She has lived in Spain for about 13 years with her 3 children. She has ‘Enduring Power of Attorney’, so I have had to update her regularly on what’s been happening medically and decisions that need to be, or have been, taken. It has been particularly difficult for the various agencies involved, because technically, Debbie is supposed to give her permission – and sign forms – for just about everything. Fortunately, however, the system is mostly humane enough to allow me, as ‘main carer’ and ‘other daughter’, to get on with the nitty-gritty, day-to-day stuff, without too much ceremony.

I have found the situation a little frustrating. Not that I want the legal as well as the practical responsibility, but when the Enduring POA was set up, in Orkney (under Scottish Law), by Debbie and Mum, I was given the impression that we had joint-POA. Apparently though, I only have authority to act on Mum’s behalf if 1. Debbie dies (God forbid), or 2. rescinds her power. She doesn’t intend to do either.

Life is like that sometimes.

***

I would strongly advise anyone caring for a relative with dementia to make sure that POA issues are settled early on, as the dementia sufferer has to be ‘of sound mind’ to sanction it.

(See Appendix 2 for details about Power of Attorney issues.)

***

One theory I have always had about Mum (but may not be the case at all), is that the reason she has lost her memory is because she has lived in denial of the truth for most of her life. For much of her life, I do not know the real truth, I just know that she has hidden it. Growing up, there was so much horrible stuff happening, that both parents – but particularly Mum – would deny. They lived in a world of preferred make-belief.

My own memory of my early years is very patchy and I have used therapy to make sense of some of what I consciously remember. ‘Stuff’ from my sub-conscious memory managed to surface from the hidden depths and revealed itself too during my therapy. But I want to know what has affected me. How much more has she hidden?

I do remember that Dad would beat her up quite badly at the caravan when I was a little girl. And now we know the real story of Mum’s burns. Later, it was me who became the victim. I’m not looking forward to telling you about this next part. The thought of it makes my chest go tight, but it is an important part of the story. Please remember not to judge.

I don’t know when it all began, I only know when I became aware of things being uncomfortable. In good moods, Dad was very physically playful and we would tickle fight, carry each other and tackle each other. I became aware of not wanting him to tickle me in certain places and of being embarrassed when he playfully checked that I wasn’t developing ‘a hairy chest’. I began to dread the playful moods nearly as much as the bad moods. One day Dad and I went on a long bike-ride, back to visit the old caravan. It felt very strange going back through the site and seeing the trickle of a stream that had once been my world of play. Somehow we got into the caravan through a window. We sat on the seat that was once Debbie’s bed and mine. He began to kiss me inappropriately and to take off my clothes. I started to cry, but he continued. I was so scared, but he seemed surprised and disappointed and tried to talk me into it as he touched me and explained how he loved me and wanted to show his love; how love begins at home and this was what he needed to help him; he loved me and I could help him feel better and no one needed to know; I would enjoy it if I would let him; it wasn’t hurting anybody; it was good. I sobbed more and more, pulling away and going rigid and shaking. Eventually he got angry and stopped. He had not had what he had hoped and was very disappointed and ‘hurt’ by my ‘lack of love and understanding’. He left me to get ready and we cycled straight home, my legs like jellied lead.

From then on I was even more terrified of him, especially being alone. Every time we were alone he would ask me again to ‘cuddle’ him; he would plead with me and tell me why I was selfish, just like my mum, causing his depression and making him ill.

I knew I could not say yes. If ever I could speak, I would say, ‘What about Mum?’ or ‘But you’re my Dad!’ I didn’t dare tell him that I just didn’t want to. For some reason, he thought that me being his daughter made it more right than if he went to a stranger.

This went on for the next six years until I left home. Some days he would go on until I cried, then he would hit me and go away. Some days he just went on trying until someone else came home.

Twice he held a gun to my head, after me watching him put the bullets in, then he pulled the trigger. Once, having packed to go on a school trip to France, Daddy played Russian Roulette as I waited, desperately praying that I would be able to leave the house.

Some days I hoped that something awful might happen to me whilst out and about – having an accident or being kidnapped – so that I would have a good excuse not to go home and if I was dead, it would ‘serve them right’. Then it would no longer be my fault. It might make him happy. It might make him stop. I know it was to his credit that he didn’t ever force me sexually, but I still wonder if it would have put me out of my misery. I also feared that he might stab or strangle me instead, so I used to sleep with my back to the wall, one arm covering my heart and the other shielding my neck. I still sleep more peacefully like that.

At the time, no one admitted to knowing anything. I certainly didn’t dare tell a soul. As for many poor children in this world, it was the dreadful secret. I often wondered whether my mum hadn’t guessed what he was doing. Eventually I confided in my Isabelle, but I knew that if any word of complaint got back to Dad, my life would literally end.

About five years before he died, at our last meeting in Orkney, I told Dad how devastating this had been for me, but his response was, “I’m sorry I hurt you. You were still too young.”

About the age of 13, I had become a Christian. I still know, as I did then, how much God had protected and encouraged me throughout this time. I was also grateful that He had sent other wonderful people into my life to affirm me. I know He preserved my life.