Just One More Question

by Niall Tubridy

  ‘He was lonely and depressed, and it was my fault. I felt terrible and I tried to undo the damage and invited him around again all the time, but it wasn’t the same. He seemed to have lost interest in life. He would babysit occasionally, but the joy was gone out of it for him. He seemed so unhappy, and started to snap at the kids, whom he adored.

  ‘When he forgot to pick up Charlie from school one day, I began to realize something might be wrong, but I didn’t know how to approach it. I persuaded him to see his GP, who agreed he was depressed and suggested a referral to a psychiatrist. Dad refused to go; he didn’t trust doctors after Mum had died so young – sorry.’ She smiled when I flinched.

  ‘So we muddled along for a year like that, but I lost confidence in his ability to mind the kids and he noticed that I was asking him over to mind them less and less. He agreed to let me hire a cleaner, which helped for a while. I thought he was coming out of his post-retirement blues but then I met one of his poker buddies in Tesco.

  ‘Jim asked me how Dad was. “What do you mean?” I said, “Sure, you see him every Tuesday?” He told me he hadn’t been coming since January. It was June then, and Dad hadn’t said a thing about not going to poker any more. Jim seemed wary so I asked if they’d had an argument or something.

  ‘He said it was nothing like that, just that Dad didn’t seem to enjoy the cards as much and didn’t seem to be able to concentrate on the game at times. “We were worried he was drinking a bit too much,” he said, “but we didn’t like to say anything. And then he just stopped coming.” Jim said he called him a few times to ask him over but Dad said he was babysitting. So, after a while, he just stopped asking.

  ‘I was shocked but kept it together in front of Jim and decided to confront Dad at the weekend. When I called to the house it was in a state again. I called the cleaner to vent but she told me Dad had informed her months before that he didn’t need her any longer.

  ‘When I asked Dad about it, he said he didn’t want anyone in his house and he could look after himself. “But, Dad,” I said, “you can’t. Look around you.”

  ‘He started to cry, and it was the first time since Mum died that I had seen him cry. You have no idea how upsetting it is to see your father cry.’

  At this point in the story, Emma was crying herself. Over the following few months, she renewed her efforts to include her father in her family’s coming and goings. She brought him with them on family trips to the zoo, the Botanic Gardens and even took him shopping, which she knew he hated but felt it would at least get him out of the house. Nothing was helping. Peter was uninterested in everything, and when he came around to their house would sit quietly in the corner nursing a glass of whiskey.

  She thought the problem might be booze, but she didn’t think he drank that much. Nonetheless, she asked him to cut back, causing another almighty argument. ‘How dare you?’ he had shouted at her. ‘Mind your own business, just like you’ve done most of your life since your mum died. Why are you trying to make amends now?’

  Emma was destroyed by blaming herself. She called her brother in Sydney, even though he was too far away to help. He and their father had fallen out years earlier over something no one could now remember, but his anger hadn’t abated, so her efforts fell flat.

  Emma went with her father to their family doctor once more, and when the GP recommended that he see a neurologist, she knew there must be something more to all of this.

  It is remarkable how even close families can miss what is right in front of their eyes. When I met Peter it was nearly two years since his retirement. Emma had told me he was always rather reserved but the man before me was barely able to look me in the eye. He sat down and then, just as quickly, stood up to take off his coat. He became flustered looking for a coat hook, and then irritated when I asked him how old he was. Emma was mortified.

  ‘Just tell him how old you are,’ she said.

  ‘Nineteen forty-two,’ he said sullenly.

  ‘How old does that make you?’ I asked.

  ‘You’re the doctor. If you’re so smart, you can work it out.’

  ‘Dad!’ Emma said. ‘What’s wrong with you? Don’t be so rude.’

  ‘There’s nothing wrong with me!’ he said, loudly. ‘You’re the one dragging me along to see this quack.’

  There was an awkward pause as Emma looked at me in shock, red-faced. This was the moment she understood that her father was no longer the man he used to be. He had always been kind and gentle, her hero all her life. But his changed character could no longer be denied. She didn’t need a neurologist to tell her something was seriously wrong with her father’s brain.

  Reluctantly, Peter finally answered a few of my basic questions, but baulked at my request to draw a clock. ‘Don’t treat me like a child,’ he fumed.

  I asked him about his favourite buildings in Dublin, and which ones he might recommend I see; I admitted I knew nothing about architecture. He softened a little, but stalled.

  ‘The main ones,’ he said.

  ‘Can you give me an example?’ I asked.

  ‘You know the ones I mean,’ he replied tersely.

  I moved on to the physical examination. He shuffled when he walked, but it wasn’t Parkinson’s. His feet appeared stuck to the floor; it’s called ‘marche à petit pas’ (walking with small steps) and suggests the involvement of the frontal lobes of the brain. Problems in this area can also affect our emotional state.

  When I placed my fingers in his hands he grasped them reflexively, like a child does when you place your finger in their tiny palms. I scratched the belly of his thumb muscle gently and the side of his mouth (mentalis muscle) contracted. When I placed the knuckle of my index finger on his lips he pursed as if to kiss it. Peter was showing many of the neurological signs we see in children before their frontal lobes develop. When the front part of the brain develops, the so-called primitive reflexes I was eliciting disappear. When it starts to degenerate or atrophy, these primitive reflexes may reappear. In other words, a part of Peter’s brain had gone back to its ‘baby state’. He had frontal lobe dementia. Emma started to cry quietly. Peter put his arm around her, and his eyes welled up too.

  While there are different types of dementia, by far the most common is Alzheimer’s disease. Regardless of type, it involves the slow degeneration of one’s cognitive faculties, usually starting with memory, and is often associated with behavioural changes. In the initial stages it is extremely variable between individual patients; some become docile and withdrawn while others appear agitated or even belligerent.

  Our ability to treat dementia is still very limited. Medications can – sometimes – slow the cognitive decline somewhat, but it would be a brave doctor who would give a definitive answer to the inevitable question of ‘How long?’ The truth is that we just do not know with any certainty exactly how each person will decline, but decline they will. Some seem fine or at least functional for years; others only get months.

  I arranged scans and blood tests just in case there was a more treatable cause of Peter’s memory problems, to check vitamin levels and thyroid function and to exclude tumours that can fool us, but I knew I was just trying to put off the inevitable conversation with my old friend. The MRI scan showed that Peter’s brain had begun to atrophy (shrink) already, and Emma called a halt to further tests; she knew they wouldn’t change anything.

  Practical to a fault, Emma arranged an enduring power of attorney order and started to research nursing homes. It was still early days, but Peter was already coming to the point where he could not safely live alone any longer. Until she found somewhere, Emma wondered if she could manage him in her own home with her husband and young children. She didn’t want him to go into a nursing home: ‘They’re all so depressing,’ she told me. ‘I feel like I’m just getting rid of him after all he has done for me,’ she said. ‘Is it awful for me to wish he would die peacefully in the night?’

  Peter refused to move into Emma’s, so for a year or more she ju
ggled her job, her marriage and her children with what she referred to as ‘her latest child’ – her father. Something had to give, and eventually she took some time off work. When I met her on one of her now very rare nights off, she was a shadow of her former self. Her upset at Peter’s diagnosis had been replaced by feeling guilty for having persuaded him to go into a nursing home, which he had eventually done. Now she was angry. ‘Why me?’ she lamented. There was nothing useful that I, or anyone, could say. All of us feel useless to some extent in the face of dementia, and as a doctor it is depressing not to be able to help much either.

  ‘It’s like bringing up another child – in reverse,’ she told me. ‘He can’t dress himself. He makes a huge mess every time he tries to eat, and we more or less have to feed him. His steps are as tentative as when the children were learning to walk. When we have him out for a visit and he goes to get up, just to go into the kitchen, we all hold our breath and, if he even sways slightly, someone will jump up to prevent him falling. It’s like he’s been trapped in his adult brain his whole life, and now he’s as dependent as he was as a small child, and he can’t remember any of it. He behaves like a child too, either sulky or happy.

  ‘How did the same brain grow from nothing as a child, to develop over a lifetime, only to disintegrate back to what he started with near the end? At least with cancer or heart disease you could blame his lifestyle but here there’s nothing. There’s no reason to it. He has always been very healthy, and he used to lecture me about drinking and smoking when I was younger. What’s the point?’

  Emma was already mourning her father, and mourning the living brings with it many of the same mixed emotions as mourning the dead. She was sad for him, but she also felt sorry for herself – and scared for the future. Will this happen to me? Will it happen to my children? We try to show empathy, to grieve for our loved ones when they get sick or die, but a lot of our grief is for ourselves and our own fate.

  Peter lived in the nursing home for another four years. For the first couple of years Emma would bring him out for a walk, or even attempt a lunch in a local restaurant. But eventually she gave up on this. Her children were growing up. She returned to work, and life took over again. Her father acknowledged her less and less when she called in to see him. By the end, he didn’t recognize Emma or his grandchildren. People talk about flickers of recognition in their loved ones suffering from dementia, but Emma saw none of this. Her visits tailed off.

  By the time her father died, Emma was emotionally spent. ‘He died three years before he died,’ she told me later. She would suffer waves of guilt for a very long time after he had passed away. It was only years later that she was able to think of him again as the father he had been, the kind man who had done his best for her after her mother died, putting aside his own broken heart. She remembered his loving soliloquies about his work and how much that had inspired her. Finally, instead of being haunted by the vacant shell he had become, she was able to miss her lovely father, and mourn both him and the lost years at the end of his life.

  34

  * * *

  ‘WHERE DO ALL THE OLD PEOPLE GO?’

  ‘Where do all the old people go?’ my young nephew once asked me, wide-eyed with disbelief when he discovered that his uncle looked after sick people.

  ‘What do you mean?’

  ‘Well, I know that people get sick and some of them die – but not all of them? So where do the ones who don’t die go?’

  I wasn’t sure what to say. And for all of the childish naïveté of the question it struck me that his understanding wasn’t all that far removed from how many of us proceed through life, somehow not quite grasping that death is coming for us all. Indeed, I sometimes wonder: what do people think is going to happen to them, ultimately?

  The older I get as a doctor – and, indeed, as a potential patient of the future – the more that thoughts of a ‘good death’ occupy me. Is there such a thing? We hear of men and women who have sudden heart attacks and die in their beds and, while the shock is hard to overcome, it is frequently, according to their surviving loved ones, a great relief that they did not suffer.

  Yet the expectation of their being a cure for everything and everyone is a strange defence mechanism we employ to avoid thinking about the inevitability of our own death. When people bring their elderly relatives to hospital, how much do they want the doctors to put their loved ones through before saying enough is enough? Obviously, we treat everyone as best we can and aim to restore the optimum quality of life for everyone regardless of age – after all, some eighty-year-olds look and act like fifty-year-olds, and vice versa, so age in years is not necessarily an indication of well-being or even health. You always want to give people hope. But when do you stop giving false hope and face reality?

  Patients’ families can be annoyed when a doctor suggests that someone may only have weeks to live, as if they are ‘giving up’ on them. Likewise, they feel vindicated when a patient defies all predictions and lives to see another year or more. The flip side, of course, is worse – when you suggest someone should be fine and then within days they die of a complication of their illness that was impossible to predict.

  Modern medicine is exalted by most free-thinking folk. The progress in research and treatments in the last fifty years has been exhilarating, and the strides made to keep us alive at either end of life are astounding. Have we, however, reached the zenith of life preservation at one end of the scale? Are we keeping people alive for our sakes, or for theirs?

  As doctors, many of us say we would like to be treated differently from the way we treat our own patients, which strikes me as curious. We likely say it because we see many relatives who are oddly willing to inflict painful tests and the misery of waiting on results on people who are coming to their natural end. Or when we propose that a course of treatment be stopped, there will always be one family member who will disagree, putting you and the other family members in the invidious position of having to keep someone alive and possibly in distress against your better nature. Most doctors have seen the traumatic deaths of frail, elderly and infirm patients and never want to go through something similar themselves.

  This is what happens. If a person in the terminal stages of life does not have a Do Not Resuscitate (DNR) order clearly outlined in their medical notes, then it is incumbent on the nursing staff to call the emergency cardiac arrest team when someone suddenly deteriorates. This involves a team of doctors from all around the hospital getting paged simultaneously, dropping whatever they are doing and rushing to the patient who has possibly arrested.

  It is rather frightening to see a horde of young doctors running along corridors past people sitting having coffee with visitors, a stark reminder to those who are less sick of what can be at stake in hospital. It is even more upsetting for the elderly men or women in a geriatric ward to see a group of frantic young doctors trying to bring someone they may know back from the dead. We try to protect the other patients from seeing such things but it is not always possible as the team tries to attach drips, set up the cardiac monitoring machine and begin the electrical attempts to restart a stopped heart.

  Sometimes the effort is successful; other times the arrest team is not able to resuscitate the poor patient and, after an hour or more of chaos on the ward, the old men or women must try and go back to sleep as their erstwhile roommate is taken to the morgue. It is the stuff of nightmares. It is because we have all seen this so many times that doctors say we do not want this to happen to ourselves or our loved ones. Of course, maybe we will change our minds when it is our turn.

  We often offer families of the infirm elderly the option of a DNR order if the chances of a meaningful recovery seem extremely limited. By meaningful we mean that we hope to resuscitate everyone, but not at the expense of brain damage or physical incapacity that might leave them in a worse state than before the arrest team was called. If someone’s heart stops beating for long enough, then the brain becomes severely damaged and, whil
e we might restore a heartbeat, we might not restore their mental faculties.

  Some patients are resigned in the face of illness and will tell you frankly what they do and do not want in terms of treatment. Others will go into a deep state of denial or anger when the treatment appears not to be working. At such times it is hard not to countenance your own mortality, and that of your own loved ones.

  Ultimately, ‘Where do all the old people go?’ has only one answer, and I think people are becoming more aware that they should be having this conversation earlier in their lives, rather than burying their heads in the sand.

  Abigail was ninety-three years old when I was called to see her. She had been in hospital for nearly three months with pneumonia and had started shaking when she was eating her dinner. It had taken the reduced staff that long to notice because for the first two months Abigail was unable to feed herself.

  She had been diagnosed with dementia a year or two before, and had refused to go into a nursing home when her friends had suggested it. She lived in a second-floor apartment with a lift, so somehow she had managed to look after herself prior to her admission to hospital. She had a son, Geoffrey, who lived in Norway with his family and was not home in Ireland much.

  When I approached Abigail’s bedside I saw the frailest woman I had ever seen up to that point. She looked like a little bird, her hair an unruly mass of long grey tresses. She lay so still on her bed while the ward bustled around her I presumed she was asleep. It was like seeing a once-famous movie star in repose. I coughed and she opened one eye to look at me suspiciously.