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.

Week Five

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

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

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

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

***

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

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

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

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

The baby was dead.

The shock numbs all sense.

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

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

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

***

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

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

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

***

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

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

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

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

***

Chapter 4

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Week Four

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 “What was your favourite animal?” I tried.

“Errr…a cat!”

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

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

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

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

***

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

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

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

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

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

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

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

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

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

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

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

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

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

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

***

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

Roller Coaster

Climbing, soaring, awesome

falling…

The excitement is breathtaking as the ride just begins;

the path I steadily climb,

higher and higher, the air getting thin,

exhilarating rushes of wind;

Reaching a peak it rests for a while…

the views from up here, I inhale –

the beauty, creation, the planets and stars

from this awesome height I rejoice…

With joy and with awe I would stay here forever

a sigh as my head tumbles back…

but this is the ride where high turns to low…

and this will not last,

back down I will go,

with a scream and a tear

and a moment of fear;

I will land with a thump back below!

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

sick with no stomach and empty inside;

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

that this is reality and that was a dream…

Climbing, soaring, awesome

falling…

Why don’t I get on the nice Carousel,

that gently rotates all the time?

No ups and no downs, no loops upside down

no sickness or wobbly limbs.

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

and wait while each animal follows its course –

round and round

round and round

round and round…

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

Jesus knows what it’s like.

His highs and His lows were deeper with love

than mine ever were or will be;

and God raised Him higher and higher

and higher

and he’s here even now with me:

giving me hope

that I’m never alone –

In the climbing, the soaring

the awe and the falling –

and I trust He is leading me home!          Dawn.