Day to day; coming to terms with Caring.
Chapter 1 June 2007
Yesterday Mum did so well with the new regime: the clothes were left out in the right order (as discussed with the Occupational Therapist) and down she came – all dressed and smiling. (She hadn’t managed to change the underwear, so we’ll have to address that some other way. Donning clean stuff before bed is unconventional to me, but should work well enough) I felt so pleased. ‘Breakfast Mammy?’
In the evening we tried another of the O.T.’s suggestions: I gave her a long broom and asked her to sweep the kitchen. She seemed happy and, after I moved precariously balanced potential disasters, I left her to it, to do my exercises before Simon returned.
Mammy had swept the floor and there was a satisfying pile of debris to show for it. Full of praise, I issued her with a dustpan and, with lots of direction, she managed to finish the job. Success number 2.
Then she forgets and moans, “Can I do anything?” (I wish she wouldn’t phrase it like that.) “I’m just hanging about again!”
“Conor is watching TV; I suppose you could find the sitting room and join him.” I suggested.
She found him this time.
But this is a new day. A screen of long hair sways behind another screen of cereal boxes: the boy is shoveling his way through a bucket-full of breakfast. The boy is Josh, my oldest son. He is 12 years old and enormous. He doesn’t have the same people-skills as others, but he is talented, clever and lovely. He has Asperger’s’ Syndrome, but it’s not always obvious. They call him ‘The Tree’ at school. He’s a handsome, hairy, 5’ 10”, size 11 shoe, hormonal, a ‘GREB’, apparently.
Conor is stirring, but he’ll have to go to school alone today, now Simon is working out of the house. Conor is 10 years old and an entertaining charmer. Simon now has a job at the Science Park, just a stone’s throw from Gibbons Street, where the mechanics’ yard used to be that my Dad and Grandad owned.
On automatic pilot I open the dishwasher to begin the ritual of emptying and making the lunches.
It’s ‘Broad Glade Day Centre’ today and they collect anytime between 8.30 and 9am. ‘The Broad Glade Day Centre’ is a recently built Residential Care home and Day Centre, just a twenty minute walk from our house. Mum is taken there by minibus on Thursdays and Fridays, but she doesn’t like to go. I cannot leave Mum in the house alone and I need a break from her sometimes.
I’d better see how she’s doing with the dressing today.
“There you are at last!” she sighs with that inimitable ‘hard-done-to’ tone. “I wondered where you were. It was a long night.”
“Mammy, why didn’t you get up and get dressed? We left all your clean clothes there for you to put on when you got up; – like you did yesterday. You did really well yesterday!”
“But you didn’t come. I was waiting for you. And nobody came. So I went back to bed.”
“Remember the Occupational Therapist? You want to be independent with getting yourself up and dressed in the morning, so you don’t have to wait for anyone. Yesterday you did it really well. Here are your clothes for today… I’m making sandwiches; you get these clothes on and come down for breakfast. OK?”
Grump. Sulk. She’s not happy. But I’m not going to let anyone get to me today.
Josh is late – why do children hate wearing waterproofs? I suppose Josh loves the rain and can’t see what’s wrong with wearing it all day. And Conor just likes to be stubborn and contrary.
Mum’s not down yet, so I’ll intervene.
Good, the nightie is off, but the top is inside out and she looks upset.
“Shall I put that the right way round, Mammy? It’s a bit tricky like that!” We’ll try teamwork today. I’ll leave her to don her slip-on shoes independently and I’ll put the landing light on.
“I’ll go and make your breakfast, Mammy. Come down when the shoes are on.”
Conor is very cuddly this morning; he’s been good and got dressed, shoes on and hair brushed.
“Conor, when Nana comes down, go and greet her, cos. she’s a bit grumpy this morning!”
“Morning Nana?” he beams, sidling up and giving her a warm hug.
Conor is so good with her. He’s a bit cheeky, but he gives her so much time – mutually beneficial of course, as he needs an audience and she needs entertaining. It couldn’t have been better really.
I feel guilty.
Why? Not doing something for somebody else I suppose. The boys are at school, Mum is at the day-centre, Simon is at work and I am ‘free’. Cleaning the house, cooking or shopping – these are guilt-free, but reading a book, swimming, even making coffee just for me, seems – naughty? Self-indulgent? Selfish? And now I’m writing, just for me – a day of indulgences.
I want to justify myself. You see I did sort the washing and tidy the breakfast stuff. I also made up a black grout to replace some loose tiles and cleaned the hall. Is that enough?
‘Guilt’, but not a ‘guilty conscience’, not about these issues. I have done nothing wrong.
Conscience kicks in when my brain, heart and spirit know that I’ve done something not loving – which is more often than one would hope. But ‘guilt feelings’ seem almost masochistic – they are not helpful, as far as can see, so I should choose to ignore them, I think.
The really big, bad thoughts are about coping, or not, with Mammy.
I can’t fetch Conor from school today because Mum gets delivered home any time after 3pm on a Thursday and I have to be here. I can do the shopping locally when she’s back, as she’ll enjoy the activity and that gives me more peace now – it’s OK Dawn, go and make that coffee.
My husband Simon and I met on ‘the Internet’, on a ‘Christian Connections’ website. We both knew that we were looking for a serious, long-term partner and marriage. He is hoping for children. I am prepared to honour that, God willing. Simon is a gentleman with (undiagnosed) Asperger’s Syndrome, like Josh, which presents itself, when his guard is down, in a repertoire of peculiar physical habits and mannerisms. I can trust him, respect him and love him. At the time we met he mostly worked from home, writing computer software programmes for large scientific installations. He’s an ‘electrical engineer’. He had his own home and was clearly practical as well as a computer whiz. Josh didn’t want me to get married to anybody, but thought Simon was cool; Conor was looking forward to the whole thing – especially the outfits and the party.
I was living in Kilburn, London, but had been considering moving back to Nottingham, so during the wedding plans, we also searched out a property in Nottingham.
Mums are supposed to be at weddings – especially your own. She said she wanted to come, so we put lots of thought into it and she came, with an escort, to our wedding, staying with me in my little flat – along with uncle-tom-cobbly-and-all.
It was hard work and fun, with all the last minute vanities and butterflies.
If Mum was at a loss as to what to do, she’d be in the loo, and as we only had one loo…
It was a wonderful wedding – everyone said so.
We moved into a house in Nottingham on August the 15th 2006. It is a lovely Victorian house with traditional features: high ceilings, cornices, fireplaces and little tiles. And here I am:-
New schools, new home, new family member/structure/dynamics.
New role for me as a house wife and carer.
No income for me.
Challenges, losses, gains, freedoms, promises, hope…
“I know the plans I have for you. Plans to prosper you and give you a future.” (Jeremiah: 29. V.11)
I’m holding on to that.
Mum was born in April 1946, Dad in December 1945 – both of them just after the war, but in the days of rationing and frugality. Mum grew up in the Meadows area of Nottingham and would have been eight years old when rationing came to an end. Both of Mum’s parents had been involved in the war effort – Nana was in the land army and Granddad was a panel beater for the air force.
Mum had a passion for music – loving the Rock n’ Roll – especially Elvis. Like many young people at that time, Mum bought as many of the latest records as she could afford. She had to sell her records a few years after she married as Dad did not share her passion for Elvis and, besides, they really needed the money. I think it nearly broke her heart.
At 16, Mum – Avril – was pregnant with Debbie. That was a terrible shock to her mum, who was known as ‘The Duchess’, because she was ‘a bit above the norm’ and wore fancy clothes. (Dad didn’t like her much and called her ‘fir coats and no knickers’.) Mum had been working for six months as a typing clerk in a small office at Raleigh Industries. Being pregnant and unmarried was still considered very ‘shameful’, although Nana herself had had Mum before she was married. Anyway, Debbie was born in May 1963, just as Mum had turned 17. They got married that Summer – all three of them. Then they moved into Dad’s mum’s house and Monica (Dad’s big sister) moved out.
Less than 2 years later, after the birth and loss of Mum’s second baby, Avril, I was born.
Dad rarely worked and what he did earn he often drank in those days. Mum was busy with us and Dad was too proud to claim any benefits. It was not a healthy pride, it was a snobby, arrogant pride that he learned from his mother, who would rather make her daughter work two jobs than claim help for herself. I remember as a child being almost proud of the poverty that they had endured in their early marriage, and loved to hear of their diet of dried NHS milk (which presumably was for us babies) and the molasses, cod-liver oil, salad-cream and bread. Mum hated salad-cream.
I knew that there had been a fire. Mammy wore polo-necked jumpers for most of my childhood, due to the severe scarring all over her chest, neck and upper arms.
The story was that she had been painting a reclaimed dolls pram in front of the open fire and had knocked over the bottle of turpentine, which had brought the fire over to her and up she’d gone in flames. It was an horrendous story, but Daddy was the hero that heard her screams and came to the rescue. He threw her to the ground, wrapped her in a large rug and saved the day. Apparently his hands were terribly burned and wrapped in bandages too.
A couple of weeks ago, Conor said to me that “Granddad had burnt Nana.” Somewhat surprised, I told him the story that we all knew, of Granddad, the Hero. He insisted that Nana had told him, so I asked her how the fire had started. She must have forgotten the original story, because she became very sorrowful and told us how Daddy had deliberately set fire to her himself. (He must have soaked her in turpentine, for the story they later used to have been believed.)
She said that he had set her alight and stood to watch her burn.
How terrified must she have felt to have the man she adored, crazed in such an atrocious act, in front of her, whilst the heat of the flames were all around her?
Why she didn’t leave him then – for her own safety and that of her little children, who must have been upstairs sleeping – is part of who she is and her weakness (or strength?). She says that he was hurting more than she was and that he didn’t want to live. Somehow she doesn’t seem to have taken it as personally as one might expect. She stuck by his story and she stuck by him. But then, if he tried to kill her once, I guess he might do it again if she upset him or got him into trouble. So at everyone else’s expense, she protected him. Always.
“HELLOA!” someone calls.
Mum’s back and they need to speak to me. I’m on the receiving end of behaviour reports now.
“She was a bit out of sorts today. She was teary this morning. Thought you might know what it was about?”
“Not really, she had a bit of trouble getting ready this morning and got a bit upset…”
“And she seemed to have trouble with her lunch, co-ordinating everything…couldn’t pick the glass up properly?”
What do I say? Co-ordination is definitely a growing problem.
“Well… thank you very much!”
And I am very grateful for those precious few hours when there is just me and no one hovering behind me or waiting for me. I am so selfish.
She was back in time for us to go and meet Conor on his way home from school and get the bits-and-bobs from the ‘Coop’ as well. I did ask first and she said “No”, but I really should have insisted that she used the loo before we went out. It can be very distressing for us both when she suddenly needs the toilet in the middle of the street…