The current night-time routine goes something like this – Mum comes to say prayers and join our ‘goodnight time’, usually in Conor’s room, as Josh’s room is up the second flight of stairs. Simon and I take turns to be with each child. Then I take Mum to the bathroom and for night-dress, medication and bed. Medication is only a mini aspirin (against strokes), a Simvastatin (against cholesterol build up) and two puffs of the Salbutamol (to stop the wheezing). She is usually so tired by this time that her eyes are flickering and she cannot think for herself, so getting undressed is very much a guided affair. I give her a tablet into the hand, she pops it in her mouth and then looks into her hand and at me – back and forth.
“Do you need your water?” I’ll ask..
Then we get ‘the shakes’, a few attempts to swallow and then the next tablet. Lastly, the Salbutamol – she looks surprised to see it, screws up her little nose and squishes it against the mouthpiece – she looks like a little pig – and we both laugh – it’s part of the routine.
“Suck!” I instruct… “Now breathe out through the nose… Suck…out through the nose…Well done!”
Nine times out of ten, she will giggle and say something along the lines of,
“What is it supposed to do?”
And I take a deep breath, smile, and explain all over again.
I awoke to the sound of Joshua’s alarm this morning, at 6:30am. Mum came down then with her trousers on back to front, but that’s OK, as her tummy is bigger than her bottom, so they actually fit better that way. She had her shoes and socks on and an open cardigan on top of her bra. Something else wasn’t quite right though and she was particularly unresponsive.
When finally all the boys had gone and we sat down with a second cup of coffee, Mum said, “Oh yes, there’s something I need to tell you.”
In essence she said that she had got up in the night, looked around and wondered where everybody was, come downstairs, looked this way and that, and had gone ‘out onto the road’ to find us. Then she had come back in again, but couldn’t find anyone.
“It has been such a long night!” she moaned.
I don’t think I handled it correctly. She clearly hadn’t been out onto the road, or out of the house, because she cannot get out. She has never yet managed to get out of the front door, nor close it. The door is so stiff that you need two hands, elbow grease and a knack. And it is extremely noisy to open and even more so to slam shut.
But she had her story firmly in her mind. Somehow this sticks in her memory as real to her. Was she hallucinating? Had she dreamt it? Had she heard the road and looked out of the window? Was she remembering a childhood reality or fear? I don’t know. I tried to explain all of this, but she refused to accept it, “because I was there!” she insisted.
So I asked her to go out and show me what she had done. This was perhaps cruel, but I didn’t want her believing that she was unsafe and able to wander in danger. Needless to say, she couldn’t even find the door to the road, so I showed her the door and asked her again to show me where she had gone. She could not open the door. Of course, then she was frustrated that I didn’t accept her story and was ‘scared’ by the confusion. More hugs and a chance for her to release some more tears.
I should have pretended that she was right.
I tried to make her laugh with the idea of her story in this evening’s papers – ‘page three lady, out in the road early this morning, looking for talent.’
The bus came ten minutes later and Mammy still seemed ‘flat’. I hope she doesn’t carry it with her all day.
Mum has been dissatisfied and ‘bored’ all day. I’ve had some chores to do, but we went shopping together and visited Pat, she spoke to her sister on the phone, did a tour of the garden, had tea and cakes, and listened to ‘Far from the Madding Crowd” on cassette. By 7pm, I thought she was going to burst, she looked so angry and huffy.
“All I do is wander about, with nothing to do. Just walk about.”
She cannot remember going out today, or anything else she’s done, so she does believe that all she does is wander about. Sometimes I have nothing useful left to say. I do recap on the activities of the day for her.
Today she did apologise, after my explanation. She does seem to realise when she has been ‘mardy’.
I’m also a bit nervous for Conor on Wednesday – he goes for his general anaesthetic and teeth pulling.
The boys don’t know I’m pregnant yet. That’s the other thing – this is the start of my 7th week, and the last baby died during the 7th week, they said. That is making me out of sorts too.
Today we’ve been busy all day and it has felt good. After the usual Monday routine, we walked up to the church where I recently discovered that Mum’s mum and dad both have their ashes ‘buried’. Mum and I sat contemplating in the beautifully peaceful memorial garden. I discovered that the vicar lived next door, so, feeling brave, I rang the bell. He was very accommodating and took us to see the plan of the garden and the book of records – their names were there: Elsie Marjorie Cowen, died 1982 (A8) and James Alvin Cowen, died 1992 (B39). It was very satisfying and felt quite strange, that after all these years, Mum and I should end up living a ten minute walk away from her parents’ place of rest.
We have decided to get a marble memorial ‘flower-pot’ made as soon as possible. Mum is very pleased with the idea and wants to pay for the work, which is fitting. Anyway, with the back pay coming from the Pension Service, she can afford it now.
I want to be buried when the time comes.
I asked Mum, but she doesn’t seem to know. It became a family discussion and Josh said he wants to be ‘left to nature’ or fed to the lions and Conor wants to be cremated and his ashes thrown to the wind from the top of a high mountain.
I loved my Nana and Granddad Cowen. They were the only family to ever to take us on holiday and they told amusing stories, sang songs and were a bit ‘risky’, cheeky and daring. Nana wore make-up, fur coats, perfume and lots of smiles, and she chain-smoked. She was riddled with cancer when she died – only 65. Granddad was 5 years younger, wore a cap, braces and smoked a pipe. He was not much liked by his own kids, but loved by his grandchildren. He was 70 when he died. Nana was an Anglican and brought her children up through the church to confirmation. I remember Mum telling me, many years ago, that she had decided at the wise old age of 13, that the Bible was a ‘bunch of lies’ and that she was a non-believer.
Years later, when Daddy died, Mum used to experience ‘him’ coming to visit her regularly and this caused her to ‘know that there is life after death’ and accept Christianity for herself. As she put it in a letter to her ‘Aunt Grace’, in December 1995, “It’s my first ever experience of anything ‘unusual’ and now I’m a firm believer!”
Last night was the ‘Joseph and his Technicolour Dream Coat’ presentation at Conor’s school. It was all a very welcome distraction, because I was getting nervous about today. We were up at 6.15am for Conor’s general anaesthetic and operation. All were good-humoured at home and no one dawdled getting up. Then Mum collapsed again at the breakfast table and fell off her chair. We kept it low-key, as again she didn’t know it had happened. Simon has taken the morning off work to help. In the car to the hospital, Mum had another turn. Simon will have to inform the Day-Centre when he drops her off later. I keep a record of all her fainting fits.
Conor and I arrived at the hospital in good time, but had a very long wait. At first we had fun, playing a game with two soft toy characters that he’d brought with him, then we had some great chairs to play in and two and a half-hours later we were called to the operating theatre. The anaesthetist was excellent. He kept Conor distracted beautifully whilst he put the needle in. I watched it go in, then looked at Conor and got such a shock. He was out cold. They told me to kiss him and go. His eyes were open like a corpse, and it was all I could do not to close his eyelids or to cry as I kissed him.
“Look after him please.” I pleaded.
I went and prayed, marched around and drank some coffee.
He was ‘down’ for 70 minutes, due to his little body, they said. He was very woozy afterwards, but he wouldn’t sleep. He kept trying to stand up, only to find his legs too weak and would fall. He was feeling sick and of course his mouth was still all very numb from the anaesthetic, which made drinking water and eating ice cream satisfyingly messy.
Then we had a heart tugging film to cuddle up to – just Conor and I. I feel like I’ve been awake all night and day – that spaced out feeling.
Mum is home from the Day Centre now and Conor’s got a big fat lip and is complaining of a bad back. After tending to him, suddenly I felt compelled to look out of the window, just in time to see Mum disappearing out of the back garden. Down I ran and caught her at the corner, heading for Burton Road. I suppose I should have waited to see what she would have done, but this time I couldn’t leave Conor, so I had to bring her straight back. She insists that she knew where she was and how to get back, but I don’t have the energy to risk losing her today.