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.
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.