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 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 7^th week, and the last baby died during the 7^th week, they said. That is making me out of sorts too.

***

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

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

I want to be buried when the time comes.

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

***

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

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

***

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

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

“Look after him please.” I pleaded.

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

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

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

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

Week Five

We arrived in good time to ride the car park helter-skelter to the 7^th 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 25^th 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 – 6^th 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 8^th 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 12^th. 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 15^th,  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 15^th 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 90^th and is a bundle of smiles and encouragement. They consists of ‘Carers’ and the ‘Cared for’ – with a wide range of care needs – real people, unpretentious, kind, daft and, above all, supportive of one another. I am very much a newcomer, but they have really welcomed us both. It was they who had organised yesterday’s trip to West Midlands Safari Park. There is always the ‘raffle’ – even on the coach.

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

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

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

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

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

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

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

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

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

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

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

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

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

 “What was your favourite animal?” I tried.

“Errr…a cat!”

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

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

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

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

***

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

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

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

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

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

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

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

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

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

Mammy loves the garden and I inherited that love

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

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

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

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

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

***

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

Roller Coaster

Climbing, soaring, awesome

falling…

The excitement is breathtaking as the ride just begins;

the path I steadily climb,

higher and higher, the air getting thin,

exhilarating rushes of wind;

Reaching a peak it rests for a while…

the views from up here, I inhale –

the beauty, creation, the planets and stars

from this awesome height I rejoice…

With joy and with awe I would stay here forever

a sigh as my head tumbles back…

but this is the ride where high turns to low…

and this will not last,

back down I will go,

with a scream and a tear

and a moment of fear;

I will land with a thump back below!

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

sick with no stomach and empty inside;

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

that this is reality and that was a dream…

Climbing, soaring, awesome

falling…

Why don’t I get on the nice Carousel,

that gently rotates all the time?

No ups and no downs, no loops upside down

no sickness or wobbly limbs.

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

and wait while each animal follows its course –

round and round

round and round

round and round…

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

Jesus knows what it’s like.

His highs and His lows were deeper with love

than mine ever were or will be;

and God raised Him higher and higher

and higher

and he’s here even now with me:

giving me hope

that I’m never alone –

In the climbing, the soaring

the awe and the falling –

and I trust He is leading me home!          Dawn.

Week Three

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

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

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

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

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

early days at the caravan

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

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

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

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

***

Chapter 3

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

“Can I do anything?” she pleads.

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

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

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

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

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

“How can water be so wet?”

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

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

***

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

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

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

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

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

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

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

Shower or bath-seat from now on.

***

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

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

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

Mum used to paint in the Orkney Isles.

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

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

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

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

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

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

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

mum running the post office on Graemsay

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

And now she can do so little for herself.

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

Week Two

Mammy was a great help this morning. She remembered the clothes business and was already dressed and downstairs when I trundled down.

‘Tree’ was there, grunting his way through his second bucket of cereal.  Then Conor came down dressed, washed and brushed too. What a morning. And it wasn’t even 8am.

Mammy was smiling when I greeted her. She knew she’d done well. I told her so.

Conor is being very good about me not doing all the school runs this week. Soon he’ll be like his brother and find it ‘highly embarrassing’ to have me anywhere near the school.

But at the moment he enjoys the Nottingham novelty of me being a Mum in the playground to walk him home. But it is ‘The Broad Glade Day Centre’ again today and they don’t come until after 9am on a Friday. They have to vary the rounds and give everyone earlier and later shifts – to be fair to all.

Time to ourselves, mother and daughter, and I have a delicate announcement to make. Shocking really, but because I dread the response and disappointment from Mum, I have also neglected to prepare myself for the weekend ahead.

(Extricate those guilty feelings, Dawn, and do what you have to do.)

“I have to get things ready for a wedding this weekend, Mammy.” Pause to watch the response, but clear.

“It’s somewhere up… Yorkshire way, I think. It’s in a house called ‘Sledmere’.

I showed Mammy the painting in the sitting room of a former ‘Sir Richard’ posing arrogantly in his hunting gear in one of the rooms at ‘Sledmere’; at ‘the Big House’. I’ve never been there.

“Will there be someone here then?” she managed.

“No, I couldn’t get anyone to come here this time, but you will be able to stay for the night at ‘The Broad Glade Day Centre’ – like you did at Easter. You will be well looked after again. Is that OK?”

What can she say?

I was dreading telling her.

“But that’s not until tomorrow and I have to sort out what I’m going to wear for such a grand occasion. I need your help. Would you mind coming to advise me?”

The power of words to build up or to tear down sometimes astounds me. And the way we use and abuse their magic astounds me still more. I got it right this time though and she was right up those stairs to give me her wisdom.

I got the go ahead for the outfit and we came outside to wait for the bus.

The rain has stopped and we survey the sagging garden. The smell of green is rich.

It’s already 10 O’clock. No, you don’t need anything else. You are not staying there tonight. I’ll see you at teatime, later, today. Have a lovely time. Ah, bless her. I’m so glad I’ve told her now.

As I wave, I soak in the smells. I love my garden. The vegetables are nearly flattened under the weight of rain.

I bought a beautiful ‘Calla lily’ yesterday with flowers of the deepest cherry purple and freckly leaves. It needs ‘partial shade’ and wants to be brought in for the winter (can’t blame it for that, can you?) otherwise I’d have put it in the front garden. It looks like a meadow out the front. I take so many photographs of the garden; I could probably show you some. But you couldn’t really see it, smell it and feel it, so…

When I’m gardening I am so very much me.

It’s been about 5 weeks since the front garden was shaved and weeded and it’s now the middle of June. I wanted to weed it and tame it a little, but I’m so pathetic, I don’t have the heart – I look at those little plants squeezing between the paving stones and think: “Ah, it’s worked so hard and it’ll probably have a little yellow flower on it.” So I clear away that which is obviously dead and wander around my mini-meadow, wishing I could see the overshadowed plants that were intended to be pride of place. Still, they’ll all have their glory.

The sky is brightening and a hazy sunshine promises another lick of warmth. The cobwebs are dazzling as they bounce with the weight of the raindrops. The buoyancy and strength of the webs are amazing, as they move to the rhythm of the ground, shaken by the trucks going along the main road.

But I’m sure my garden must reflect me, as does the house – always in a state of needing stuff doing; everything in it’s place, but I’m the only one that remembers where that place is.

‘Round-to-its’ – everyone needs them and in my house there’s always a shortage. Simon keeps threatening to get around to it, but they’re hard come by.

Isabelle, on the other hand, seems to have plenty of  ‘round-to-its’. She’s very ‘out with the old, in with the new’; ‘if it doesn’t fit, give it to someone it does’, sort of girl. She’s my best friend since we were 12.  She is straight talking, efficient, looks great, knows me and still loves me. .

We both seek integrity in ourselves and share Christian values, vision and purpose. And I love her.

She is the sister I chose. When I was disowned by my own family, Isabelle and her father (‘Pa’) they took me in, and their home became mine.

Isabelle is married to Brian and they have two children, Bruno, aged nine and Violet, aged seven.

Her garden is years more established and about 4 times bigger than mine is and it looks out across a magnificent vista for miles. She pulls the weeds out.

I must go and do something domestic. No one noticed I’d done the tiles. I don’t suppose anyone would notice if I didn’t vacuum the place for another week. Isabelle would.

If anyone asks, I can now justify my day. I cleaned upstairs – well, not quite all the way up to Josh’s room – and did some painting and some gardening.

The gardening? You can’t really quantify it, can you? Not without sounding really nerdy (and I might just verge on that). I decided the indoor plants looked in need of a breeze and a bit of a photosynthesis boost. I needed some myself and stripped to my vest, but I seem to have embarrassed the sun again and now the rain’s back – just in time for everyone’s homecoming.

***

I have been brought up to love gardening and exploring the world of nature, especially as we lived in a tiny caravan space for nearly four years.

Fire damage and bad memories were probably as much why we left Nana’s house as anything. But I guess we’ll never really know now. Denial then and dementia now. It was a strange life at the caravan. The only time we were allowed to spend indoors was meals and bedtime. The caravan really was tiny. I’d say it was 12 foot by 5 foot, at the outside. My parents’ bed folded away into the wall and Debbie and I slept, head to toe, on a settee thing that ran the width of the back of the caravan. Debbie was sleeping with her knees bent long before we left the caravan.

But we learned all about the great outdoors. We climbed trees and lived in them. We scratched buckets in the well for water. One summer, the water was so low that Mum had to dangle me by my feet and I had to scrape the water and frogs from the bottom of the well. We made fabulous dens in the underworld of stream-side hedgerows – weaving doors, mats and shelves out of long summer grass – and had ‘parties’ of baked scones when our friend from the club used to come and play. Sometimes we would spend so long up the trees, that we wouldn’t notice the cows returning to the field. Once we were chased home – down through the field and under the barbed wire – by some excited bulls, after us dreaming in the branches for too long.

Long childhood summer days when we explored as many possibilities as young girls would dare and certainly wouldn’t have admitted. Daddy had a pick-up truck, ‘Marigold’, with stenciled flowers sprayed on, real hippie style. Mum would walk her bicycle to the village with us in the morning cycle home afterwards, but some days Dad would come to the square at home time, to meet us too, and us kids would go in the back of the truck with the bike, whilst Mum rode in the front. We loved that.

I am grateful for those unusual experiences we enjoyed, living in the caravan, and how we learned to work with nature, improvise, reuse and recycle. Nothing was ever wasted. I did learn to appreciate the value of things.

I wanted to be in the circus. I practised balancing a broom on my finger for weeks. I was good at hula hooping too. We had a ‘lean-to’ at the side of the caravan where much of our stuff was stored and where we often took shelter when the evenings were inclement and dark. There always seemed to be a mysterious glow around the caravan at night, that gave those long evenings a scary, but magical quality. My stilts lived in the lean-to. They were great – at least twice my height. I had to climb onto the roof of the caravan to get onto them. I would then totter like a peacock all over the campsite, then gracefully use the sticks to propel myself forwards until I could jump down. Anyone who saw me thought it was amazing, which encouraged me greatly. I loved to be a tomboy and to do clever circus tricks, or anything that might impress my dad, but I ended up quite impressed myself, so that was all right.

One day my stilt expeditions came to an abrupt halt. I was daring to ‘stilt-walk’ over the table and chairs in the lean-to, but the stilts were not quite tall enough to go that wide and they slipped – leaving me impaled on the ‘spire’ on the back of a chair. I was never taken to the doctor and I suffered a lot of pain for about a year. I don’t know whether it was that experience, or the fact that we had to go about 100 yards to the toilet blocks to use the loo, but I spent most of my childhood with headaches, nosebleeds and constipation. I hated going alone to the smelly toilet blocks. I dreaded the daddy-long-legs that flopped all over you as you went through the door and I hated the pain when I tried to wee.

Not having a bathroom, at night we shared a bowl of warm water, taking turns to wash our ‘top half’, then to stand in the bowl and wash the ‘bottom half’. This was a habit we continued right until Debbie left home at 17 years of age, despite the fact that the house we then lived in had a perfectly good bathroom.

Another vivid memory of the caravan was of Debbie and I being woken one night by Mum screaming, “No, Malc, please!”  When we dared to peep around the curtain, Dad had the hunting rifle up, threatening to shoot Mum. Shortly afterwards he came through to us with an offering of pickled vegetables and told us we were having nightmares. We certainly were. He was drunk.

Daddy used to get drunk at the club in Calverton and would still drive the car, after 14 pints. Twice he overturned the car (avoiding a dog in the road) and landed in a ditch. He smoked in those days too. One Christmas Mum bought him a cigarette-rolling machine, but he gave up smoking a week later – his New Year’s resolution.

Dad also once ‘left’ my Mum, and left me with a rare and beautiful memory – of Mum taking each of us girls onto her knees, eating ginger-nut cookies, with Mum crying and saying that she loved us and was sorry for everything. I was not sorry for that moment, I thought the good life had finally begun.

But he came back very soon. Daddy was formidable. He could be fun, but it was all so unpredictable. Unpredictable and with the power to kill.

early days at the caravan

Lost Down Memory Lane: Early-Onset Alzheimer’s: A Carer’s personal story.

Lost Down Memory Lane: Early-Onset Alzheimer’s: A Carer’s personal story.

By Dawn Fanshawe

Contents

Acknowledgments

Introduction

Prologue  (pg 5-7)

Part 1 (pg 8 – 55) Day to day; coming to terms with Caring.

Chapters 1 – 10                       

Part 2 (pg 56 – 74) Making a decision – Mum in a ‘home’.

Chapters 11 – 13                              

Part 3 (pg 75 – 124) Sectioned! Hallucinations, drugs and laundry

Chapters 14 – 21                            

Part 4  (pg 125 – 137) Sunny Meadows Nursing Home

Chapters 22 – 24                         

Epilogue  (pg 144 – 148)

Chapters 25 -26

Notes/Bibliography (pg 149)

Appendix 1:  (pg 150)

Early, middle and late stages of Alzheimer’s

More information about Dementia

Choosing a care-home

Appendix 2: Where to go to for help  (pg 154)

Things to find out about.

Useful websites

Helpful Organisations

Financial support/benefits

Lasting Power of Attorney

Appendix 3: Mum’s funeral tributes (pg 158)

Acknowledgements

Firstly I thank my mum and my dad, for giving me life.

I thank God for protecting me and giving me new life in Him.

I thank all my family and friends, whose love and encouragement have given my life joy and purpose – particularly Simon, Joshua, Conor, Monica, Debbie, Catherine and family and Julia. And I thank my Church family for their love, support and prayers.

I also acknowledge my gratitude to the NHS and Council Services (in Orkney and Nottinghamshire); I thank the agencies and Voluntary Organisations and Support Groups that have supported my mother and supported me, as her carer, over these years of her increasing need. Particular acknowledgments go to the residents of the island of Graemsay, who loved and supported Avril in her own home and the place she adored.

I also want to acknowledge the commitment, sacrifice and practical love shown by all you millions of carers, who make such a profound and positive difference in our society – especially to your family.

You carers are the heroes. I dedicate this book to you.

Introduction.

Carers Trust 2012 – key facts:

• There are almost seven million carers in the UK – that is one in ten people. This is rising.
• Three in five people will be carers at some point in their lives in the UK.
• Over the next 30 years, the number of carers will increase by 3.4 million (around 60%).
• The number of people over 85 in the UK, the age group most likely to need care, is expected to increase by over 50% to 1.9 million over the next decade.
• Alzheimer’s disease is the most common form of dementia affecting around 496,000 people in the UK.

Over these past few years I have met some fantastic carers – ordinary people who have answered ‘yes’ to a call of duty and compassion for a loved one. Many have sacrificed careers, livelihoods and their life as they knew it, to care for parent, child or spouse.

This book is an in depth picture of the journey through dementia. This is the main focus.

I wanted to record what it was like to be the main carer for a person with Early-Onset Dementia – a carer’s memoirs, about ordinary, unique people and their very special relationships. It is a snapshot of the journey, not just of the sufferer and carer, but of the dynamics and issues faced by the whole family and friends mourning the gradual loss of the loved one.

My mother – Avril – will be the main focus in this story, but you will become briefly acquainted with some other fabulous people. The fact that they do not feature in detail in the book does not mean that they do not feature in a big way in my life.

It is a story of tragedy, guilt, loss, hope, forgiveness, love and choices. It focuses not only on what the carer sacrifices, but about what else they gain as they embrace such a journey.

My mother and I were never very close. She disowned me when I was 17 and kicked me out of her home. Now I have taken her into my home and become a mother to her.

It is important to say that this is not a story of blame or gossip, but one of forgiveness, healing and an acknowledgment of the frailty and beauty of what is to be human. There are no real villains in this story.

Whether it is Mum’s story or mine doesn’t really matter. It is our story; our journey, but you obviously discover it through my eyes. It is precious and written with love. It may make you cry, but I hope it will make you laugh too and give you hope.

Not all of you will be caring for someone with dementia, as I am, butI want to encourage you, if you are a carer, to find all the support that you can get, to make your life, as a carer, as comfortable as is possible.

Appendix 1 contains an array of facts about dementia – like who gets it and what it is.

In Appendix 2, I have given information and contact details to help you to navigate some of the invaluable support services that have made this part of my journey much more bearable.

Appendix 3 contains some of the personal tributes written for her funeral.

The story is true, but most proper names have been fictionalised for their privacy.

            It is not how we die, but how we live that matters.

Prologue

We all forget things from time to time. We forget a birthday, lose the keys, walk into a room and forget what we came in for. It is normal. We ‘rack our brains’ for that word ‘on-the-tip-of-our-tongue’ – we know it’s in there somewhere, but sometimes we have to ‘dig deep’.

So we write notes, keep diaries, calendars, tallies, address books; we write memos, take photographs, buy souvenirs – a whole industry of ‘aide memoirs’ available to make sure we remember those things that are important to us. But that is not because we have dementia, or because we are stupid; it is because our lives and brains are so busy and so preoccupied with processing such immense amounts of information. Dementia is very different.

So I am trying to determine now, in retrospect, when Mum’s dementia first became apparent.

Mum was by nature a bit scatty and nearly always late for something. She was “four foot eleven and three quarters” and always a slightly bonny lady, with short legs, a pretty face and long brown wavy hair. She was outwardly friendly, quite capable practically, always busying, stubborn, long-suffering and self-contained. My father was comparably very tall, also handsome, fair-haired and dangerously unpredictable. Outwardly a quiet man, a ‘dark-horse’, he was a depressive, who avoided the company of others. He was very talented as a mechanic and a maker of things, but was uneducated and had no confidence in his abilities.

Mum and Dad moved from Nottingham in 1987 to a little croft on Graemsay, a small island in Orkney.

The Good Life on Graemsay

Having started a family very early in life, by the age of 36, their two children, Debbie and I, had both left home.

There were about 23 people living on Graemsay when my parents moved there. They had a two roomed croft, land (including some of the beach), a huge barn, byers, ‘bothies’ and a well. There was no running water or electricity at the croft, and no shop, church or amenities (except the Post Office) on the island. There was a boat running three times a week over to Hoy and to mainland Orkney. In the middle of the island near the school (which was open for only one child at that time and has since closed) there was a telephone kiosk. For provisions, one had to phone an order from the Mainland shops and wait for the boat to bring them over.

Mum grew vegetables and they lived a frugal ‘good-life’ in this remote corner of the world.

In April 1995, aged 49, Dad died, just 5 days before Mum’s 49^th birthday. They had been married for 32 years.

Dad’s sister Monica went to keep Mum company in 1996 and lived there for two years. She found Mum ‘very mean spirited and childish’, but in retrospect she thinks that it was the first signs of the disease affecting Mum’s behaviour.

When it began I am not sure.

“Not firing on all cylinders”; “The wiring has come loose”; “Not the full ticket”; “muddled” – these were some of the expressions used to describe a noticeable change in Mum by early 1999. She began to lose everything, even herself on several occasions. She was 52 years old. 

Her sister, Julia, first noticed that something was wrong with Mum as early as 1996, when Mum stayed with her in Nottingham. In total Mum missed five connections on that journey from Orkney to Nottingham. Several times that week Mum went visiting friends, but forgot to come back for dinner or say she was going out. Julia did not suspect Alzheimer’s, but she knew that Avril was not her usual self. That was already 11 years ago.

In February 1999, Mum came down to London to help me look after my children. I was a single mum and a full time primary school teacher. Mum stayed with me for a couple of weeks. One very rainy day in school I was distracted by a bedraggled sight out of my classroom window – Mum was standing in the playground with Conor in the pushchair – both of them soaked. Mum was crying because she had not been able to get in my front door. At the end of her stay with me she was to catch the late coach up to Nottingham. A friend dropped her off in Victoria, but three hours later, in the early hours of the morning, my doorbell rang and I found a very frightened, tear-stained Mammy.  She had the wrong day. Instead of phoning me, she had started to walk the streets of Victoria, her luggage in hand, with no idea where she was going. After being stopped by a few  strange men, she began to panic, but fortunately had had the wherewithal to hail a cab.

Back in Nottingham she was staying with Julia again. It was quite obvious to her by now that there was definitely something wrong with her Av. Julia returned from work on two occasions to find her front door wide open. One evening Mum did not return from her day out, but eventually, about 10pm, a kind man unknown to them phoned Julia to say that a very lost Avril had knocked on his door. A few days later Mum did it again, this time knocking on a different stranger’s door. She clearly had no sense of direction and was struggling with coordination.

She would get very frustrated with her mistakes and would chide herself constantly for being ‘a stupid woman’.

I didn’t see enough to be concerned from that distance. Mum did not sound troubled in general and usually spoke on the phone with humour and sense. In Orkney she was safe. I always thought that dementia happened to ‘old people’. My definition of ‘old’ changes year by year as I grow older, but I never suspected that dementia could begin in someone in their 50s.

I did not see her again until I went to Graemsay in the Summer of 2001. By then Mum’s ability to balance the books was suffering. Mum had had the job as Post Mistress on Graemsay for several years. One morning whilst I was there, the total morning’s business had been the sale of one stamp. Instead of dealing with that logically, she tipped the whole bag full of stamps onto the floor and began to count them all. She repeatedly lost count and spent several hours becoming more and more frustrated with the task and with herself. But she would not take any advice.

Over the next few months a friend on the island began to take over the book-keeping, as Mum would have the day’s accounts thousands of pounds wrong.  The people of Graemsay were very patient and good to Mum. I am very grateful that they enabled her to stay in her beloved home for so long. Eventually she was asked to resign from the Post Office.

I don’t know when Mum was actually diagnosed with Alzheimer’s, but she was already taking Aricept, prescribed by a consultant, in 2002 (aged 55).

I visited again in 2003 – Mum could still just about play the guitar and we enjoyed a memorable sing-along. I also witnessed the demise of her treacherous driving. She refused to wear her glasses, despite seeing nothing through the windscreen. I got into the car with her and as she reversed up the path, foot down hard, wheels screeching, suddenly the front of the car strained and ripped off, pulling half of the lodged dry-stone wall from its ancient site. I was not sorry to see the end of the driving.

Mum could no longer follow the rules of the game

After that Mum began to exhibit more signs of confusion and disorientation with time and space. I began to get phone calls from concerned residents on Graemsay, informing me of peculiar incidents.  She would wander the island and turn up at other houses in her nightwear, sometimes ‘just visiting’, in the middle of the night. She had lost all sense of time and would forget to eat or drink, or forget that she had just eaten. There were reports of stores of food gone bad. Were it not for the cats, the place would have been infested with vermin.

As Mum’s condition became more desperate, I finally began to wonder what I should do. Her writing was deteriorating, cards becoming a thing of the past. She no longer called us, we phoned her.

I arranged Community Care Services for her on the island, providing her an hour’s daily home help. There could only be limited resources on an island of 23 inhabitants. I knew they were a little ‘put upon’ and worried about her, but what could I do? She always said how lucky she was to be somewhere so safe and quiet and beautiful…I could hardly stick her in my flat in London could I?

What was the worst that could happen? She could leave the gas on; put something on the storage heater at night; go out in her nightie, fall in a ditch and die of hypothermia…

Lots of potential dangers, as there are for all of us. It was easy to minimise these concerns a thousand miles away. Mammy was happy there.

I went up again in 2005 – she was unkempt and smelly and quite dependent on others to cook, clean and order her life. But I still felt unable to help. It was her life and I had nothing better to offer her.

In August 2006, two months after our marriage, Simon, me and my family moved into this large Victorian in Nottingham. We invited Mum to stay for Christmas. She was fully escorted, by Roger and myself, door to door. Whilst she was here, Orkney Social services phoned me to say that Mum would now have to go into a home.

Mammy could not even pour herself a glass of water.

I had no excuse and no choice but to keep her with us.

She had to stay here until we could find somewhere local and safe.

She would not be able to return to the home she loved.

Like the rest of humanity, I have no idea what the future holds, so we have to take one day at a time and do our best…