When the Time Comes (ARC)

by Adele O'Neill

  ‘When was Ms Buckley diagnosed?’ Lucinda looks directly at me when she asks the doctor this question. I drop my eyes. Her question even though not directed at me will be the trampoline that everyone will jump on the reach their conclusion when Dr Hegarty answers. Did Liam Buckley leave his wife even though he knew she was terminally ill?

  ‘It was February 14th, 2016.’

  ‘So, for a patient to present in your office with symptoms would it be a fair presumption that they would have been experiencing the symptoms for quite some time before that?’

  ‘Judge, if I may?’ William is on his feet objecting to the way the question is phrased. ‘Fair presumptions are not medical facts, the witness is a witness of fact?’

  ‘I’ll rephrase,’ Lucinda nods before Mr Justice O’ Brien has a chance to reply. ‘Professor Hegarty, what is the normal procedure every patient must engage in to end up with an appointment at your office?’

  ‘Every patient would have, in the first instance, presented at their GP’s office with typical symptoms. Their GP would then make a referral to a consultant for further investigation.’

  ‘So, there is no direct appointment system, Jennifer Buckley did not wake up on the morning of the 14th of February with symptoms of MND and make a direct appointment with your office for that day?’

  ‘No. She would have been referred by a GP.’

  ‘And in the medical notes of record, when did Jenifer Buckley first notice the onset of these symptoms, that brought her to her GP?’ she glances at William, her rephrase dripping with defiance.

  ‘She reported that she had been noticing a drag in her foot, extreme bouts of fatigue and muscle spasms since November 2015.’

  She looks at me then, the accusation is in her expression. ‘So is it a reasonable assumption, in your medical opinion that the symptoms would have presented themselves in the latter half of 2015.’ The nuanced jibe at the timing of when I left Jenny doesn’t go unnoticed. The suggestion is all it takes.

  ‘And could you give a brief outline of how MND affects the body.’

  ‘Well, as the disease spreads, the patient’s muscles will weaken or start to stiffen and their range of motion will decrease and muscle pain will increase.’

  ‘And how do you determine the rate at which a patient is deteriorating?’

  ‘Patients are usually quite astute at identifying even the most miniscule of deteriorations themselves. Because of this we take account of a patient’s own observations, they know their body best, and we monitor patients on a regular basis.’

  ‘How regular?’

  ‘Every three months and we evaluate deterioration by putting the patient through a range of tests… functional tests that examine changes in breathing, speaking, sleeping, swallowing and walking.’

  ‘So, since Jennifer Buckley’s first appointment on the 14th of February 2016 how many times would you have seen her, before her untimely death?’

  ‘Nine, nine exactly.’

  ‘And in this time, did you observe clinical deterioration at a rate expected for someone with Jennifer Buckley’s diagnosis.’

  ‘Yes, it was within expected parameters.’

  ‘And would you say that Ms Jennifer Buckley, in your expert opinion, had reached the late stages of her disease?’

  ‘No, based on the scales we use—’

  ‘Which are?’

  ‘The Barthel disability scale and the MND Functional rating scale, based on these results I would place Ms Buckley at the middle stages of progression.’

  ‘Middle stages?’

  ‘She tired easily, used a wheelchair when needed, her breathing became laboured from time to time but she hadn’t yet reached the point where she would have needed the assistance of a BIPAP machine,’ he scrambles to be less technical and stretches forward to the mic. ‘It’s a breathing machine,’ he adds for clarity. ‘Nor had she reached the point where she needed artificial feeding assistance.’ Lucinda delays a moment letting the information sink in. A female juror in the front row coughs to cover the awkward silence Lucinda’s pause leaves.

  ‘So, in your expert opinion Professor, Ms Buckley was only at the middle stages of progression, nowhere near the late stages of the disease?’

  ‘Again, it’s hard to predict the progression rates due to the complexities of the disease. In fact, it’s usually post-mortem that the exact age of the disease is confirmed but as Ms Buckley presented on her last visit with me, she was not at the end stages of the disease.’

  ‘And did Jennifer Buckley ever provide you with information about her preferences when she did eventually get to the end stages of the disease?’

  ‘Yes, she did. We encourage all patients with life limiting illness to think about an advanced care directive that allows them to express their preferences when it comes to their specific care if, and when they reach their end of life. Ms Jennifer Buckley did complete an advanced care directive.’

  ‘And what did that state?’ Lucinda asks.

  ‘It stated that if and when there was no prospect for her recovery, and she was to become unable to take part effectively in decisions regarding her medical treatment, she wished that no life-sustaining treatments were used.’

  ‘Can you state for the court, what life-sustaining treatments are?’

  ‘It could be any treatment that, in the absence of it being provided, the patient would die.’

  ‘Could you give us examples?’

  ‘Being placed on a ventilator, a dialysis machine, artificial feeding either through an NG tube, a PEG tube in the abdomen or intravenously,’ he pauses before he adds. ‘It also covers cardiopulmonary resuscitation… the directive.’

  ‘And in your opinion, Professor Hegarty, was Ms Jennifer Buckley at the point where her medical care required any of these treatments?

  ‘No.’

  ‘Nothing further.’

  The courtroom falls silent for a moment while William stands to his position at the bench. He turns the pages of his brief in front of him. ‘Professor Hegarty, can you confirm for the court that in the course of Ms. Jennifer Buckley’s illness you saw her a total of nine times?’ He says the number nine as though it’s incredulous, as though it’s entirely insufficient and unsatisfactory, a whole other systemic fault. ‘Nine?’ he asks again for good measure.

  ‘Yes, we saw Ms Buckley a total of nine times.’

  ‘Can you clarify, who you mean by “we”?’ William asks.

  ‘By “we” I mean my team.’

  ‘Okay, so did you personally see Ms Buckley all nine times?’

  ‘No, that’s not…’ he hesitates, looking at the expression on Lucinda’s face. ‘That’s not the way it works, my team are tasked with seeing all the patients in the clinic, I might not get to see all patients that present at all of their visits but, I do review their charts, oversee their care.’

  ‘So, you didn’t see Jennifer Buckley all nine times?’

  ‘No.’

  ‘Thank you Professor Hegarty, you mentioned earlier that you record and take account of a patient’s observations while recording the changes in their abilities, can you repeat why you do this?’

  ‘Well, as I said, patients are quite astute and can identify intrinsic changes more readily than a battery of tests might be able to.’ He leans forward to the mic. ‘They know their own bodies and whether or not something has changed.’

  ‘So, the patients are better at identifying changes in their own bodies?’

  ‘Well, yes, I suppose.’

  ‘And just one last question before I let you go. Can you accurately predict the progression rates of motor neurone disease?’

  ‘Well, no, as I said, due to the complexities of the disease…’

  ‘Thank you, Professor, nothing further.’

  11.

  2 Days Before Jenny Died

  ‘Dad,’ Abbie stood in the porch and watched her dad park his car in the same spot that he used to always pa
rk in when he had lived there. Her mum’s car hadn’t been in the driveway for nearly a year now and it always felt more like a normal house when her dad pulled in. She waited until he got out before she whispered. ‘He still hasn’t answered, I still don’t know where Josh is.’ They weaved their way past a collection of boxes that were piled two high in the hall.

  ‘It’s okay, love, let’s get the kettle on and see what we can do,’ the lines on Liam’s forehead creased a little more. ‘Is your mum in the kitchen?’ he asked.

  ‘No,’ Abbie’s threw her eyes up the stairs. ‘She’s already in bed, the carer has already been. I told her that you were coming to drop some stuff over because you won’t be able to fit it all in tomorrow for the move. I didn’t tell her about Josh and I said that we might get a Chinese too.’

  ‘You did?’ Liam tilted his head and closed his eyes briefly. He could have done without a further delay. Alex had rescheduled her usual Friday night gig to be at home with him and he had told her that he wouldn’t be long. He hated having to leave her when she was so upset and he knew they needed to talk about everything but Abbie needed him too. A small pang of guilt washed over him.

  ‘Well, we don’t have to. It was just something to say to Mum so that she wasn’t worrying about why you had come over.’ Abbie shrugged.

  ‘No that’s fine, go ahead and order something and get something for your mum as well. If she doesn’t eat it, you can put it in the fridge and we’ll have it for lunch tomorrow, or Josh can eat it when he comes home.’ He could tell by the pitch of Abbie’s voice and the way her shoulders were yanked up towards her ears that her anxiety was high, and it made him smile that she still in her innocence thought that she could fool her mum. As soon as he got Abbie settled and tried to get Josh back home, he’d pop up to Jenny, if she was still awake and chat to her to check that everything else was okay.

  In the past he had made the mistake of underestimating the seriousness of Abbie’s worries. He had even been dismissive of them for a time, but he had soon learned that it was easier to offer reassurance and comfort sooner rather than waiting until her anxiety got out of hand. Abbie needed a special type of care, a soft, caring hand to guide her to where she needed to be and he wanted it to be his. It was unfortunate that to do so meant that he had to let Alex down but that was the way it had to be. It wasn’t an easy choice but it was one he had to make.

  ‘Okay,’ Abbie said in a sing-song voice as she picked up the Chinese menu she had already left on the countertop.

  ‘And will you make a cup of tea, so I can bring one up to your mum and then we’ll think of how we are going to get in touch with Josh.’

  Liam made his way up the stairs with a mug in each hand, passed the bathroom light on the landing which the timer hadn’t yet turned on, and tapped Jenny’s door with his foot. It was already ajar and he called to her inside. ‘Jen, it’s me, can I come in for a minute?’ He heard her clear her throat and shift in the bed before she answered him.

  ‘Liam,’ she said resignedly, ‘yeah, come in.’

  ‘Sorry,’ he walked to the side of her bed and placed the mug of tea that Abbie had just made beside her. ‘Abbie called, said she was worried,’ he whispered conspiratorially. The room was still, the only thing out of place was Jenny’s dressing gown laid across the chair that he pulled closer to the side of her bed before he sat down. His voice sounded too loud in the silence and he stood back up to close her bedroom door completely. ‘Apparently Josh is upset and has said that he’s moving out if I move back in tomorrow.’ He glanced at the bedroom door waiting to hear any movement from Abbie outside. When he didn’t hear anything, he continued. ‘She didn’t want to worry you so she called me over to see if I could do something.’ Liam answered. Abbie reaching out in despair to him was a common occurrence and one that he had long since realised would always be the case.

  ‘I know, I was listening to her on the phone. I’ve texted him, he’ll answer me when he’s ready.’ Jenny wasn’t upset or worried, she was used to the way Josh operated. ‘He just needed to blow off a little steam I think, vent some of the anger he was feeling. He’s probably in the gym.’

  ‘Maybe,’ Liam said. ‘Because the last thing we want is for him to resent me even more. Me moving back in is supposed to be so that we can fix what has gone wrong between us not drive an even bigger wedge between me and him.’

  ‘I know.’ Jenny amswered.

  ‘The whole point is so that we, me Abbie and Josh,’ he paused for a moment considering whether he would add her name, ‘and you, of course, can be a family together again, especially now.’ He reached for her hand and stroked it before she pulled her hand away.

  ‘I know Liam, but you have to remember, he stepped into your shoes when you left and you coming back now makes him feel a little lost, like the role he has been filling is no longer needed.’

  ‘I suppose,’ Liam said. ‘We are doing the right thing Jen, aren’t we, this plan we have. It is going to help them in the long run?’ he asked. When she didn’t answer, he continued. ‘You’re very quiet.’ He said wiping away a trickle of sweat that had snaked its way down his face with the neck of his T-shirt.

  ‘I’m fine,’ Jenny said softly and placed a bookmark on the page of the book she had been reading before she placed it back on the table beside her bed. ‘I’m not happy that Josh is upset, I’m not happy that Abbie’s upset,’ she scooped her hair behind her ears and exhaled. ‘But I’m fine,’ she said, her sad eyes piercing through Liam’s resolve. ‘It’s important that this happens, it’s important that they have you completely in their lives. And I know we have our conscientious objectors,’ she grinned, ‘I think we’ll always have them. But I’m sure we’re doing the right thing. You need to be here for them.’

  ‘I’ve always been here for them, Jen, I’d do anything for them, you have to believe that.’ Liam sniffed, the heat that had built up throughout the hot humid day had intensified since he had closed over her bedroom door and he reached over her bed to open back the bedroom window. ‘That okay?’ he asked and she nodded, glad of the forgiving breeze that shimmied in around them. ‘Just remind me to close it before I leave.’ He added.

  ‘Look, I know that things are going to be tense to begin with,’ Jenny’s voice was soft and low, conscious of Abbie and the fact that she had a tendency to eavesdrop from time to time. ‘And I understand that, I really do,’ she glanced towards the door. ‘But I could really do with everyone just getting on and understanding what it is we are trying to do. Everything is for them.’ Jenny’s eyes were drawn to the framed photograph of Abbie and Josh that stood on the table beside her bed in a sterling silver frame. It was the same sterling silver frame that she used to keep their wedding photograph in. ‘Nothing else matters, or at least it shouldn’t, not now.’

  ‘I know,’ he answered, his thoughts shifting from his children to Alex. Had Alex actually mean what she had said? Had she regretted falling for a married man? He stretched his arms behind his head, a strained look on his face. ‘Look, Josh will come around,’ he offered. ‘I know he hates me right now and I know I have a lot of ground to catch up on but I promise you I won’t stop until we’re back to where we used to be.’ He glanced towards the partition wall that seperated Josh’s room from Jenny’s.

  ‘I hope you will because right now my son thinks I’ve betrayed him, my best friend thinks I’ve sold out and there’s only one person at the moment that seems to think you moving back in is a good idea,’ she threw her eyes towards the noise Abbie was making below them in the kitchen.

  ‘Tell me about it,’ Liam scoffed,’ I was just thinking the same thing myself,’ the image of Alex’s tear stained face etched across his eyes.

  ‘Trouble in paradise?’ Jenny asked sensing the desperation in his voice.

  ‘No, not, well yes, a little.’ In the two years since he had left, Alex was a subject of conversation that both of them avoided with the only mention of her having come directly
after they had spent the night together last March.

  ‘It’s okay,’ she offered, ‘you can mention her name.’

  ‘It’s just that,’ Liam considered how much of his problem he should share. ‘Alex is feeling a little odd about everything, this arrangement of me moving back in to be with the kids, me moving out of the apartment.’ The image of Alex’s blotched skin and red swollen eyes flashed across his eyes. ‘But saying all that, she does understand why.’ He was quick to add.

  ‘Does she now?’ There was a dismissive tone to Jenny’s voice, an impatient glib expression on her face. She wasn’t particularly concerned with how Alex Kennedy felt nor, for that matter, was she concerned with how it would impact on Liam and Alex’s relationship. Josh and Abbie were her only concern and she didn’t have all the time in the world for things to work themselves out.

  ‘You asked, I’m not saying that Alex takes priority in any of this I’m just telling you how it is.’

  ‘I know,’ her voice was softer. ‘Force of habit,’ she explained. When they had spent the night together last March they had decided they would never talk about it again. It was a one-off thing. A moment of emotion and madness that had brought them together and it was better for everyone if they kept it in the past. ‘I presume, she doesn’t know about… you know.’

  ‘No,’ he looked at her in the eye. ‘We decided that it would stay just between us.’ There was a slight wobble in his voice as though the land had shifted underneath him. ‘We are still of the same opinion?’ he asked anxiously.

  ‘Yes, I just wondered was that the reason for the upset, that’s all.’

  ‘No, I haven’t told Alex and I have no intention of either. What happened between us, was a…’ he shrugged his shoulders unable to find the words he needed to describe it. Mistake had been on the tip of his tongue.