On their return to England, Mum continued to try and get Dad to go to the doctor to get his memory checked. Each time she would book an appointment, Dad would come back and just say: ‘Nothing wrong with me.’ He was a great actor and it was only later that we found out he would go to the surgery and recite long poems he had written and knew by heart. He would stand in the waiting room in front of the patients and receptionists and read them aloud – one poem was even called ‘Hypochondriacs’! He would go to his appointment and perform as if he was stepping on to the stage, mic in hand, and he’d often have the surgery in stitches. Anyone looking in from outside would think there was nothing wrong with him, while back at home it was a completely different story. I don’t know what I thought was wrong, but I didn’t make the connection with Alzheimer’s.
That summer I met a guy from Birmingham, half my size and ten years younger than me. He was confident and cheeky and although I wasn’t instantly attracted to him, eventually I completely fell for him. He was also a medical student.
‘You need to get him checked out, Si – this behaviour isn’t normal,’ he’d tell me.
‘But he goes to the doctor, and they keep saying there’s nothing wrong with him.’
‘You need to get a second opinion. I’m worried about your mum. How is she coping in all this?’
In September, I booked a train ticket to go up and see Mum and Dad. I was forewarned by Mum that the roof in the backroom was leaking and that they needed to get it fixed. It had been like this for months apparently, but Dad wouldn’t let anyone come round and sort it because he said he could do it himself.
When I arrived home and saw the damage I was shocked – the roof had practically collapsed. They had buckets on the floor to collect any water if it rained, but Dad went crazy when I said that we needed to fix it there and then. It had begun to pour down outside and water was coming in through the roof, so I drove to B&Q and bought some blue plastic sheeting, as well as some wood with which to fix it down. Dad was screaming and calling me every name under the sun while I crawled onto the roof, trying to secure the plastic sheeting in the pouring rain. One of our neighbours came round to help and when I took him inside to show him how far inwards the roof had collapsed, he was shocked: ‘I’d seen that water had been collecting on it, but I didn’t think it was this bad.’
Mum immediately started crying and Dad continued to fume. I was soaked to the skin and ashamed that I’d been away and let all this happen. We booked a builder to come and fix the roof, but as it was turning into autumn, it was impossible for him to do the work because it was constantly raining, so we made do with the plastic sheeting for more months than I want to remember.
One other thing I noticed on this trip home was that Dad didn’t sing in the house any more. Years ago, he would constantly be singing – whatever the time of day he always had a song. He’d set up his equipment in the front room and spend hours belting out classics and going through records that he’d bought from charity shops or car boots, but all that had stopped. Not only that, they didn’t go to the clubs any more because Dad didn’t want to go out. Even music couldn’t make him happy and all he wanted to do was sit in his shed and do newspaper quizzes. By August, when I asked him what he wanted for his birthday, he said a collection of brain-training books. In hindsight, he was obviously trying desperately to keep everything together.
Chapter 14
We knew nothing about Alzheimer’s disease. We just thought it meant people forgetting things and in no way did we think that Dad’s behaviour at home was connected. It was a lonely time for us. As everything was falling apart, we were still trying to get him a proper memory test and I couldn’t understand the delay. Meanwhile, things were getting worse and his rages were impossible to be around. They would come out of nowhere and were full of frustrated emotion. He lost the ability to filter anything and so it came out in a torrent directed squarely at those who loved him and wanted to help him the most.
Mum’s mental health was at breaking point. I’d receive awful phone calls and she’d be in fits of tears – often while I was at work. One time she admitted that, out of nowhere, he came into the kitchen in a rage, dragged her out by the hair and threw her on the floor in the lounge. He was unrecognizable as the man who had swept her off her feet by dedicating songs to her, who had been so vibrant and full of life and soul and kindness. Records would be strewn across the house, clothes would be thrown anywhere, but if you moved them at all, it would lead to one hell of an argument because someone had touched his stuff. Mum would be crying constantly. This was not like the old days when they would row on an equal level – there suddenly weren’t any rules and she couldn’t just go home to her mum to be scooped up.
‘I hate him. I just want him to go,’ she would sob.
I’d often find her in the kitchen, crying to herself. Then Dad would come in.
‘What’s a matter with her? Tell her to piss off,’ he would rage.
It was an awful time. He was like a monster, and if truth be told, I also wished he wasn’t there – he was making everyone’s life a misery.
I was so concerned about Mum’s safety that I called up the doctor to try and get an appointment for her to talk about what was going on at home with Dad. I was sick of all the aggression and weird behaviour – something seriously wasn’t right and it had become terrifying. Any fun times with Dad had gone and he was clearly very ill.
Luckily, the regular doctor Dad saw wasn’t there, so we had an appointment with a locum who was covering. I went in with Mum to make sure she talked honestly about what was going on. The doctor could see something was wrong as soon as we both entered.
‘It’s about my dad,’ I said.
‘His behaviour at home is so aggressive and we don’t know what to do any more.’
‘Can you describe what he does?’ she asked.
‘He’s fine most of the time, he just gets angry,’ Mum said.
‘Mum, you need to tell everything that’s happened. No one can help you if you don’t say what’s going on.’
‘Has he hit you?’ asked the doctor.
Mum just burst into tears and was inconsolable. It was horrible to watch.
‘Mum, you need to say what’s been going on. Everyone’s here to help.’
‘We’ve tried to get his memory tested but each time he comes back and they say there’s nothing wrong with him,’ She said, sobbing.
Her eyeliner was now smudged all over her face. She was in a complete state and I couldn’t believe it had come to this.
‘I’m really worried for my mum’s safety,’ I added.
‘Listen, I’ll get him in again and see what we can do.’
When we left the doctor’s, Mum sat in the passenger seat of the car crying.
‘Mum, you’ve done the right thing. You can’t go on like this. It’s not fair on you. Something isn’t right.’
‘I just feel like I’ve gone behind his back,’ she said through her tears.
‘You haven’t – you’ve done this to help him. But you need to look after yourself.’
I was fighting back the tears myself.
We drove home and pretended to Dad that we’d been shopping. Along with Mum, I felt so guilty – like I’d been telling tales about him and that I’d let him down as a son. But I also knew we had entered a new stage and we needed help. A week or so later, Mum had managed to get a double appointment with Dad at the doctor’s on the pretext that they needed to check his blood pressure. It was only at the end of the appointment that they brought up the topic of memory. Dad was – as expected – defensive, but the doctor carried out the necessary tests, and then said that he would book him in for an appointment at the memory clinic.
We heard nothing for months. We called up the doctor time and again and they said there was a waiting list and that we shouldn’t worry. That was in the October – Dad’s behaviour at home continued to become increasingly aggressive and difficult for both of us. One of the things th
at’s so impossible to know is if he has any awareness of how he is behaving. At least in the old days he knew when he was being a nightmare; he even did it on purpose at times when he was cross about something. But this short and violent fuse was on a whole other level and not something he could seem to control or predict.
Luckily, Mum had her friends around her and Edna, her maid of honour, had heard about a meeting in the town hall to talk about dementia and suggested Mum go along with her. ‘The whole meeting was about how they were building new homes for dementia patients,’ Mum says. ‘I put my hand up and said it was all very well, building new homes for patients, but they needed to get the doctors sorted.’ At the end of the meeting the chairman came up and spoke to Mum, asking her the name of her doctor. He said he would try and move things forward for us. Having Edna there was a huge support but it felt light years away from the carefree days of Mum and Dad’s courtship and their wedding day. When Edna had watched her best friend marry the man she loved, no one could have predicted their love story would end like this.
Around the same time, I was talking to my boss at work about the nightmare that was going on at home. His own mother had also suffered from dementia and he was shocked at our situation – he said the specialist had seen his mum one week after their first doctor’s appointment. I knew the time had come to take matters into my own hands, so I found the number for the Blackburn Memory Clinic and called them up directly, eventually getting through to someone who could help.
‘When did you say your dad’s appointment was with the doctor?’
‘October – I mean I know there’s queues and waiting lists, but it’s now March and we still haven’t heard anything.’
There was a silence.
‘This is really bad. You should have heard something by now – let me take a look.’
I gave Dad’s details and waited while she checked.
‘Nope. I’m sorry, there’s nothing on the system.’
I repeated the information again, giving one of Dad’s many stage names.
‘Maybe try Ted McDermott, or Thomas McDermott, or Eddie McDermott.’
‘No – I’m sorry you’ll need to go back to your doctor.’
I was furious. We’d waited nearly six months for nothing.
I called back the doctor straight away to complain and Dad was fast-tracked to the memory clinic, but of course he refused to go at first. In June 2013 it was finally confirmed that he had dementia. It had taken us eighteen months to get this confirmation and for him to start receiving medicine. To be honest, all I felt was a huge sense of relief. Once he started taking the medication, it did initially help to relieve some of his aggression and things became manageable for a while – that is until he started refusing to take it.
Pride and a stubborn nature had seen my dad through the knocks of performing, but those traits do not mix well with dementia. Dad insisted that he controlled his tablet intake, but we knew full well he wasn’t taking them. Tablets were found all around the house. Just asking him if he’d taken his tablets would lead to a full-on aggressive rage.
That Christmas Day, he came down in the morning with a face like thunder. His deterioration in just a year was painfully obvious. The previous year he had just been repeating questions; this year he complained about everything. Even the gifts we gave him were dismissed, with him tutting and throwing them to one side. Mum was in tears and I hated him for it. When we told him it was Christmas Day he would simply reply: ‘I don’t care what pissing day it is.’ Things were thrown at us, doors would be slammed, Mum would get pushed around. I wanted to punch him, but I thought if I did he would literally try to kill me.
That December I had just bought a flat in London and was completely broke. On top of that my relationship with John wasn’t going well – we’d always bicker (a pattern that was without doubt handed down to me from my parents), even though we’d just got back together again. I’d go up to Blackburn and have Dad constantly threatening or lashing out and, to top it all off, I’d just started a new job. The icing on the cake was when one of my teeth suddenly cracked in half at work, leading to a £500 dental bill. My work was suffering and I’d only been there a couple of months. One Monday morning my boss took me into a meeting room and gave me a list of tasks she wanted done by the end of the week. It was just the final straw. My eyes started to well up and I felt like I was staring into an abyss. Right then, I didn’t give a damn about anything. I’d had it. There was a pause.
‘Are you OK?’ she said.
‘Yeah. It’s fine,’ I muttered.
‘Are you sure? You look like you’re about to cry.’
‘Yep. Nope. Not really. It’s just everything feels like it’s going wrong…’ And then I explained to her what was going on. My eyes were welling up again. She was great. ‘Right, take a breath. This doesn’t matter,’ she said, pushing the work aside. ‘My mum went through the same thing with my grandma. I know exactly what you’re dealing with.’
I felt pathetic. Normally I’d be able to cope. But no matter what she said or how much she tried to console me, I felt like I’d been run over. I suppose deep down a part of me also felt I wasn’t being the man Dad would have wanted me to be. If he had known what was going on, would he have been proud of me and the way I was dealing with things? I couldn’t help but feel the answer would be no.
Back in Blackburn, I was increasingly worried by the fact he was still driving. I had so many discussions with Mum about Dad using the car – it really wasn’t safe. Whenever we went out driving it would be unbearably traumatic. He would be swearing at every other driver on the road and it was terrifying to be a passenger – a number of times I got out of the car, refusing to drive with him again. I remember one incident where we’d just had a pub lunch one Sunday and Dad suddenly drove on the wrong side of the road. Both Mum and I were screaming at him to get back on the right side, but he wasn’t having any of it, screaming back at us: ‘I’ve driven for years. Don’t tell me what to do.’ In the end, we had to call a mechanic and ask him to tell Dad that the car wasn’t fit to drive. We knew he wouldn’t accept it from us and it was the only way we could think of to stop Dad getting in the car until we could make an appointment with the doctor. This was serious. Mum made an urgent appointment with the memory clinic, telling them about the situation, but asking them to say that, because of his eyesight, he needed to give up driving. Luckily it wasn’t a problem and Dad went along with it and didn’t drive again; instead he walked everywhere – a good thing for everyone. It would make him fit as well as keeping him off the roads and we were all relieved that nothing serious had happened – it could have been a lot, lot worse. But Dad’s independence had finally gone and we had resorted to asking people to lie to him. It felt like a real line in the sand and I was terrified at how quickly this illness seemed to be sinking its claws into him and the measures we were already having to take to keep him, and others, safe.
One Saturday I drove him to the newspaper shop because it was pouring down with rain. I went in with him.
‘Morning, morning!’ he shouted as soon as he entered.
A shy Asian woman in a headscarf was standing behind the counter and two Muslim men with beards were waiting to pay for their bread and milk.
‘Right then, what does Linda want again?’ he said to me.
‘Paper, milk, and biscuits,’ I said.
Dad looked at me and said thank you in a fake Pakistani accent.
‘Now, where the bloody hell are the papers?’ he said, again in the same accent.
I was dying. By now the two Muslim guys were glaring at us. I rolled my eyes at them, as if to say, ‘Come on, he’s joking’ but they were having none of it.
Meanwhile, the woman behind the counter was grinning, as if she was in on the joke.
I grabbed the shopping for Dad and took him to pay. By now the two Muslim men had left.
‘How much is it, Mrs?’ Dad asked.
The woman priced everything up. ‘Two pou
nd twenty,’ she said.
‘Bloody hell! I hope you’re not ripping me off!’ said Dad, laughing. ‘Is this enough?’ He handed her two £20 notes.
‘Don’t worry, Dad, I’ll get this,’ I said, and gave the woman the right change.
We left the shop.
‘Right, I’m gunna walk to the Co-op.’
‘OK, Dad, if you do that then I’ll drive round and park by the side.’
As Dad walked off, I ran back into the shop. I wanted to ask her about his behaviour, as well as apologize for him. I was mortified.
‘I’m so, so sorry. He just gets confused.’
‘Oh, don’t worry!’ she said in a broad Blackburn accent. ‘He comes in every day – I know Eddie.’
‘What’s he like when he comes in?’
‘Oh, he’s very confused. He never remembers what he’s come in for, so I just walk him round the shop until we remember – it’s usually a paper and some biscuits. He gets very confused. But don’t worry, I keep an eye out for him,’ she said.
I was shocked at hearing this. Poor Dad, I didn’t know how confused he would be with people in public – it was clear that doing anything on his own was becoming a struggle.
As I left the shop, she shouted again, ‘Don’t worry!’ I wanted to give her a massive hug – I couldn’t believe how understanding she had been but I knew not everyone would react in the same way. I drove down to the Co-op with tears in my eyes. This was my dad, The Songaminute Man who could sing hundreds of songs word perfectly, the man who could just take off and follow the next gig, always confident he could make a crowd love him. He shouldn’t be like this.
I went inside and found him wandering around again, trying to work out what to buy. I watched him picking up anything but the things he actually needed, muttering away to himself. When we went to pay, Dad just handed over his entire wallet to the cashier. I was horrified – he was like a child and it completely broke my heart. He was as vulnerable as the old people he had been trying to protect when he did his gigs in the homes. I had no idea what to do.
The Songaminute Man Page 15