At the age of 17, on a beautiful August day my lovely Nana finally gave in to the cancer that had riddled her body. I was devastated. Dad took Mum to Nana’s house and then went to his yard, a motor- mechanics’ business, which he had inherited from his dad a couple of years earlier. They had left me at home to mourn in peace. I took my one cassette tape (Fleetwood Mac) out into the garden and lay in the sun, crying and thinking about Mum and Nana. After what seemed like several hours, I heard a dreadful noise. It was Dad’s car returning. My stomach in knots again I waited, hoping he’d go to bed and leave me in the garden. He banged on the kitchen window and beckoned me in. What followed is unclear, like a storm. He was ranting about me being a whore to the neighbours, disrespectful to my Nana and a nasty b***. He whacked me repeatedly around the head and kicked me to the floor, knocking the ironing board and other furniture flying. He was mad. Arms and legs pumping, he screamed at me to get out before he killed me.
I knew he meant it and how I got to the front door and got out, I don’t know. I ran as fast as I could, shaking and crying until I found myself near Isabelle’s house. She was away on holiday with her mother, but her Dad was at home. I stood sobbing on his doorstep, before plucking up the courage to knock. He was very good to me and offered me sanctuary. Later that day, Mum found me and forced me to go back home, saying that she was not going to lose her mother and her daughter the same day. I made her promise that Daddy would not touch me again. I don’t think he did. He had very little to do with me after that.
When Isabelle returned, she was furious and begged me to come to live with her. Her Dad (Mr K.) was happy with the idea and we devised a marvelous plan: one day a friend with a car came to my house when the coast was clear. We quickly loaded all my belongings and took them to Isabelle’s house. Then I walked to Mum’s shop, to give her the key and tell her what I thought she should know. It didn’t go as planned. I’m not sure how I expressed what had been happening all those years, but now it was Mum’s turn to be angry and thump me. She called me a deceitful liar, amongst other things, saying she had never liked me and threatened that if I didn’t have everything back at home by the time Dad got home, then Dad would come and kill Mr. K., as well as us. I called Isabelle and told her that I had to go back, having no idea when Dad would return. We no longer had the friend, or his Mini, so Isabelle and I legged it back and forth with box after box, until it was all back in order.
For the next few months at home, Mum was in charge and I had certain freedoms. At weekends I was allowed to stay at Isabelle’s house. I did as many of those things that young girls are not supposed to do. We rarely stayed in at Isabelle’s house, but her Dad was fabulous. She could phone him on a Sunday morning and he would always come and fetch us, from wherever we had stayed the night. One such Sunday morning, between Christmas Day and New Year’s Day, Mum saw Mr. K. drive up the road with an empty van and return with us party girls about 20 minutes later. She put two and two together and made ten, deciding that we were prostitutes, drug dealers and whatever else you think of, and that she didn’t want me in her house anymore.
She had formally disowned me. I was no longer her daughter, she no longer my mother. She typed out a contract for Mr. K. to sign (as I was not yet 18), giving him full parental rights over me. Mr. K. was happy to sign it.
That was a New Year to rejoice! How happy I was to leave. It hurt to have her disown me though.
She didn’t want to face reality. Even when Dad died, the first thing she said to me – when I rushed all the way to Orkney, from London, with my baby Josh was:
“I don’t want to hear anything bad about your Dad, now or ever. I want to remember the man I loved.”
Doesn’t that say it all?
When he was gone, she slowly lost a grip on how to ‘seem to be normal’ and then lost all the secrets and most of the memories. I can’t blame her for wanting to forget though.
I have been extra busy and a little ‘down-in-the-dumps’, with little irritations making me more tired than usual: my eyes and ears are sore, the head aches a lot again, the back is giving me ‘jip’ and, due to decorating, the skin on my hands is cracked and stings.
On Tuesday I had to take Conor to the West Hospital – this time to Orthodontics. Simon had to take the day off work, so that Mum could have her ‘Befriender’ and ‘Sitting Service’, which are both on Tuesdays. The ‘Befriending scheme’ is a service provided by volunteers and organised by the Alzheimer’s Society. Simply put, a volunteer will agree to visit the ‘service user’ at a mutually convenient time each week and ‘befriend’ them. ‘The Sitting Service’ is a more specialist voluntary organisation, run in Nottinghamshire by ‘Trent Crossroads’. These workers have some training and are paid by the Council, but they perform a similar task to the Befriender.
(See Appendix 2: ‘Helpful Organisations’)
It was a bit squirmy in orthodontics, when they put the green putty in to make the shape – and fitting the tight metal rings was painful, but the rest of the day was great. They are making him a ‘palatal arch’ for when they extract his molars. Poor Conor has to have 8 teeth pulled out in July and he is going to need a general anaesthetic – he’s still my baby and I don’t like the idea at all. I hope he gets to like soup. We didn’t get back until three. Mum had had a good day so far and remembered having ‘something yummy’ to drink in a café with her ‘Befriender’.
The Sitting Service volunteer came then, and Conor and I went for his last swimming lesson.
Interesting things happen when we become hormonal. Apart from the physical bits being more sensitive, the nerves cut like knives. As for making decisions – I become almost paralysed, as if facing a life-changing choice, like: shall I make a pot of tea now, or when I’ve finished hanging the washing? And I keep banging into things.
Yesterday and today, in amongst the decorating and gardening, I’ve been sewing up ties, cutting Mum’s hair, doing HMRC assessments, ordering a disability badge for the car and managed some prayer time. Feeling satisfied, but there’s such a lot planned, that I think I’m feeling some anxiety too. Simon’s friend is staying over tomorrow before his wedding on Saturday. Mum is coming with us to this wedding, so we all need dressing up and I have to drive. It is not easy to get ‘babysitters’ for people like Mum and as we are not sleeping away, Mum should be able to handle it.
Bruno’s and Violet’s First Holy Communion is on Sunday, with a party to follow. Debbie is coming on Tuesday, until…? On Wednesday: the Pension Credit People are coming AGAIN to ask more questions and hopefully get these forms finished… Ana is coming on Thursday night, and on Friday Simon and I fly out to Jersey, leaving Isabelle and Ana to look after the boys and deliver Mum to Broad Glade. Ana was one of our many fantastic Au-pairs that we had whilst I was working and living in London. She was our Au-pair for two years and then later lodged with us for another year before we left London. She still works in London and comes to visit us for holidays.
I am really looking forward to a break in Jersey with Simon. It will be our first time away – just the two of us – since our honeymoon.
Yesterday we went to see Mum’s dementia consultant, who I understand to be the ‘top dog’ at the St Peter’s Unit Unit. She didn’t keep us long, but what she said has knocked me for six. The very thorough O.T. had given her notes to the consultant, who, on reading them, doesn’t feel that Mum is presenting Alzheimer’s at all.
She might not have Alzheimer’s?
She said that the report suggests ‘frontal lobe’ deterioration, which is apparently not consistent with Alzheimer’s. ‘Frontal lobe’, of course, is what the ‘epilepsy specialist’ was talking about too. So if Mum is having ‘frontal lobe seizures’, would that not cause ‘frontal lobe deterioration’?
I didn’t ask these questions. The consultant wants to refer Mum to another neurology specialist for a second opinion. How will I feel, if I discover that Mum has had epilepsy all this time, which, had it been diagnosed and treated correctly, might not have resulted in this incapacitating dementia? Could treatment now halt or reverse the deterioration? Does that mean Debbie and I probably haven’t inherited Alzheimer’s? I guess some of these questions will be answered in time. Meanwhile we await the ‘brain-wave test’ (EEG) and the neurologist’s ‘2nd opinion.’
It does offer some hope though, as well as questions.
Mum had another ‘little episode’ on Monday. She didn’t faint this time, but she ‘blanked’ and her eyes rolled for a while whilst she shook. Her hands and skin look white and puffy and she is coughing again quite a lot. The GP must be sick of us by now, but we visited her again to formally get the results of all the recent tests – chest X-ray and blood tests. All of it is clear.
But the cough is still a big problem to Mum. We now have 2 more avenues to explore: asthma or possibly something to do with ‘reflux’ from the oesophagus into the lungs.
The dementia consultant has just phoned me. Her ears must have been burning. Like many of the professionals involved with Mum, she has shown genuine concern for my ‘state’ as well. The epilepsy specialist that is arranging the EEG has told her of her own doubts about the Alzheimer’s, but the other specialist wants to keep the case herself. According to the consultant, the question of type of dementia, is ‘all very academic’, compared to the day to day job of caring. Apparently in the 10% of dementia sufferers who have neither Alzheimer’s nor Vascular dementia, there is a relatively rare ‘frontal and temporal area’ dementia, which may present like Mum’s does. Anyway, the EEG should uncover more of this and I will see the epilepsy specialist to discuss findings in November. It seems a long way off. The consultant said it sounds like Mum is having chronic seizures, which prevents oxygen reaching the brain; so if it gets worse, medication for epilepsy would be better than whatever side-effects may result from the medication, but…It is very difficult watching everyone doing tests all the time, but nothing conclusive happening. I think we would all feel somehow ‘rewarded’ if even one test result would point to a definitive cause and a possible solution.
I know they are all doing their best. We all are.
I still wonder whether therapy for Mammy could be helpful. I did mention it to the consultant, that she has ‘had lots of bad stuff in her life’. She said something vague in response and I dropped it, but…