Not Right In The Head

by Michelle Wyatt

  ‘Well,’ he answered calmly, ‘I don’t think she would want to be resuscitated—do you?’

  Well thanks very much for your input Dr Kevorkian, I felt like retorting, but stopped to think before I next spoke.

  ‘So you mean to say that if your wife of 55 years—our mother—was lying on a table having suffered a heart attack, you would calmly stand by and say to the doctors, Nup, don’t bother, mate, let her go?’

  It came out a little harsher than I had intended, but I really wanted to be sure he understood the enormity of this decision—which legally was his decision to make.

  He didn’t answer, which made me realise he had actually thought about this, and maybe had decided Mum had suffered long enough. She had suffered long enough, but even though she wasn’t showing any real signs of leaving us in the immediate future, I seriously couldn’t imagine standing by and watching doctors do nothing if they had the ability to save her—and I couldn’t for one minute imagine that, in that precise moment, Dad could either.

  A friend of mine had a DNR issued by her family for her grandfather. Everyone had agreed on the decision with sound minds, as he was very old, frail and had been suffering for a long while; they felt it was the right thing to let him go when it was his time. When her grandfather’s heart did give out, most of the family were at his bedside. The doctors came in with a CPR unit—then somebody announced he was a DNR and his wishes should be respected. At that moment, my friend’s mother started yelling at the doctors to do everything they could to save him—she was desperate for her father not to pass on in that moment, even though she had agreed with the DNR decision when it was made the previous year. That scene in the hospital was very distressing for everyone, and to this day that family still has issues around it.

  So I explained to Dad that if a time came when Mum was lying in a hospital having a cardiac arrest, I couldn’t imagine we would all be happy to follow through with a DNR decision made months or even years before. In my mind, it would be easier for us to decide to let her go without the emotion of the moment confusing our decision. Bring in every doctor there is, every piece of equipment that beeps, to keep our mother alive, until we can decide as a united front that it was the right time to let her go. You can consent to a DNR on the spot, but it’s harder to reverse one.

  Dad agreed. He ticked the right box—or at least the one that felt right to me.

  20

  The circle of life

  Christmases, birthdays, Mother’s Days, Father’s Days all came and went, and we fell into the routine of celebrating any family celebrations twice: once at the nursing home so Mum and Dad could be present, and then again at someone else’s house so we could pretend that everything was normal. We never questioned the importance of spending time with Mum and Dad at the nursing home, but we never really left there thinking, ‘Wow, Mum looks a little better today.’ Once she got to the stage of basically being asleep each time we visited, we weren’t spending quality time with her. It was a depressing decline, so slow it almost went unnoticed.

  The day finally came when the nurse suggested Mum’s food should be vitamised, as she was losing her ability to chew and swallow properly. This was one of those stages that I had read about, and was dreading. Not only could she choke if food sat in her throat, but she was succumbing to mouth ulcers and infections from keeping food in her mouth too long.

  So the Sunday roast at the nursing home became the Sunday mash. The irony wasn’t lost on me that for the past few years, my mother and my son were basically at the same level of care. Both needed feeding, dressing and toileting, neither could walk on their own, and coherent words were in short supply—but my son had now surpassed my mother: she was now on baby food, and he was chowing down on steak and vegies. He was playing sport, conversing constantly, and only occasionally needed a toilet reminder; she was nonverbal, couldn’t voluntarily move, and had no control of bodily functions. The circle of life was in full swing in my universe … and cue that Lion King song playing in my head for the rest of the day.

  In my mind this new dietary requirement for Mum was an obvious step towards the final, inevitable outcome. Dad, however, embraced it. Clearly it meant he could get more food into her, as she didn’t need to chew it, so he was shovelling it in at record speed. At this stage of the disease, you would tend to start seeing a decline in body weight. Not for Mum—she was as healthy as an ox. Well, an ox that was slowly dying from Alzheimer’s disease. Dad also took this as an opportunity to get as much coffee into her as he could. Dad loves his couple of lattes each day, so he would order two at a time, whack a straw in Mum’s mouth and down the hatch. As long as her water intake was still adequate and it made Dad happy, then lattes all round. It wasn’t as if all that caffeine was going to make her hyperactive, let’s face it.

  A few times I also caught him slipping a piece of chocolate into her mouth; he told me she enjoyed sucking on it, and it would dissolve in her mouth anyway. God bless him that he continued giving her all the things she enjoyed, whether it was the best dietary option or not. (For the record, if I am at some point put on a vitamised diet and can’t feed myself, please just vitamise chocolate and give me plenty of it, and often.)

  So once again, we were at a status quo. Mum’s condition wasn’t getting visibly worse, and this new dietary system was ensuring she was being fed adequately, and any major health issues were under control.

  This is the point where you start to wonder how long somebody can physically continue in such a state. Short of a heart attack, or a devastating bout of influenza, or a fall (or technically a ‘drop’ in her case), Mum could have existed like that for another few years. I wasn’t sure I was entirely comfortable with that, from a ‘quality of life’ point of view. What exactly was she getting out of life? We couldn’t get her into her wheelchair anymore, so her world consisted of either sitting in her room or the communal area in the nursing home. To get from her bed to the living area, the carers had to use a body-lifting machine, which looked pretty uncomfortable to be strapped into. She couldn’t talk, couldn’t walk, couldn’t recognise anyone, and most likely wasn’t enjoying her food—what kind of life was that? What would she have said to us, if she could talk? What would she have wanted us to do? It becomes very taxing on your mind and your soul and your conscience. There were days I wished that phone call would come and it would all be over—for her sake, and then, selfishly, for all our sakes. We all knew she wasn’t going to make a miraculous recovery from this disease, so the outcome was inevitable. But as much as these thoughts consumed me, the alternative was that I would never get to see her again, to hold her hand, to tell her I love her. So it was business as usual and we visited as often as we could, and supported Dad in every way we could, and accepted that he’d be by her side until the very end—whenever that may be.

  Around that time, one of my best friends was diagnosed with stage-three bowel cancer. She was my age, and had a son the same age as mine—and until the day she called me with her ‘news’, my life had seemed pretty unfair. It’s amazing how quickly life can put things in perspective. When she began undergoing treatment, I was her designated chemo buddy. Spending hours on end in a cancer ward is rather humbling, to say the least. Cancer can strike anyone, of any age, at any time. Much of the talk that takes place in chemo wards is about ‘getting through this’ and ‘fighting this disease’. Of course there is inoperable and incurable cancer, but there is often an element of hope as well. Hope for relief. Hope for remission. Hope for a cure.

  Those of us who have or have had a loved one with Alzheimer’s know that there is currently no cure for the disease. No treatment, no holistic medicines, no lifestyle changes can either reverse or cure it. Given that it primarily affects the older generation, there is almost an element of acceptance about it. We joke about having it, and deep down many of us probably fear actually succumbing to it at some point. Once something is seen as inevitable, it becomes easier to joke about it; we aren’t just tempting fat
e anymore, it’s a fait accompli.

  I wonder how that will all change when a cure is found.

  21

  Timing is everything

  I had started working on a new television project and was putting in ten to twelve hour days. Those hours were not unusual when I was working on a show; it becomes all-consuming, both mentally and physically. I had spent most of my life freelancing in the world of television, moving from show to show, with periods of time off in between productions, which suited my lifestyle perfectly. I was able to afford the luxury of immersing myself in a show, knowing I’d have a month or so off at the other end. My husband had been playing the role of Mr Mum perfectly, but as my mother deteriorated, he was also having to pick up the slack with Dad, fielding the nightly phone calls and then relaying the latest news when I returned home that night.

  One Monday evening I got home around 11 p.m. Exhausted, I sat down in the living room to catch up on the daily news. My husband told me Dad had called to say Mum wasn’t doing that well—she wasn’t very interested in food and would barely open her eyes. Nothing out of the usual, so I just assumed she was a bit off colour, or had picked up a bug.

  Early the next morning, before heading into the office, I gave Dad a call. He sounded his usual positive self—but also a bit worried that he couldn’t get any food into Mum, and that anything he did manage to get into her mouth just sat there. I suggested he chat with her carers and maybe ask a nurse to do a bit of a check-up.

  So off I went to work, and gave Dad a call in the afternoon. Mum was still the same, but the nurse didn’t think there was anything sinister going on—she had no infections or illness that required treatment, so they’d keep monitoring her and hopefully she would start eating again tomorrow. My husband would be conversing with Dad, then updating me via text message.

  I should explain at this point that after our son was born, my husband and I took a few years off work so we could both be full-time parents. Our son was a long time coming, and was going to be our only child, so we felt it was important to not miss out on anything. I went back to full-time work first, and it was then I realised that I had married a very thorough man. Because we were both so invested in our child, my husband fell into the habit of texting me several times during the day with a quick update on our child’s activities—‘he just woke up’, ‘just had lunch’, ‘rolled over’, ‘had a poo’. These text messages would appear on my phone frequently, but from a desire to not be looking at my phone ten times during a meeting, I occasionally didn’t get to read them until later in the day.

  During that day, a few ‘no change with your mum’, ‘still hasn’t eaten anything’ text messages came through from my husband. (I’m glad ‘just had a poo’ wasn’t one of them—that might have tipped me over the edge.) At home that night, my husband said he’d chatted with Dad, and Mum still hadn’t eaten anything.

  The next morning, after a restless sleep, I rang Dad and he agreed to keep me in the loop about Mum’s condition. As the executive producer of a live television show, Wednesday was show day, and as they say in the very glamorous world of show business, the show must go on—so I had no option but to go to work. I tried calling Dad a few times throughout the day, but his phone kept going to voicemail, which wasn’t unusual, as he couldn’t figure out how to work his mobile at the best of times.

  At about 4 p.m. my husband called me; the nursing home staff, who had also been consulting with the nurse, had come to the conclusion that Mum had now fully lost her ability to swallow. This basically left us with two options. We could either give them permission to start administering liquid food intravenously—or we could stop feeding Mum and place her on palliative care.

  As that last sentence registered in my brain, I was being called into the studio for our show rehearsals. I stood in my office for a couple of minutes collecting my thoughts. Neither of those options were good ones. We had to make a decision on whether we wanted Mum to pass away soon, or sooner. I wasn’t even sure what palliative care really entailed, but I ascertained from my husband that we could make the decision tomorrow, so I went off to rehearsals.

  For the next few hours I was in show mode, making decisions about whether a fart gag was the best way to end a comedy sketch. One of the writers pleading his case actually said, ‘Come on, trust me, it will kill.’ Well, buddy, you know what would actually kill? Not feeding someone—but is it more humane to do it slowly while drip-feeding them over a few months, or do you do just stop feeding and then, before you know it, bang, they’re gone. But my job at that moment was to make a decision about a fart joke—a decision that seemed so trivial compared to the one I should have been making. We had a live show going to air in less than an hour, so I had to pretend my head was in the game, and in the end I pulled off one of the greatest compartmentalised performances of my life. I think it was a good show—we went with the fart gag and it did kill.

  The next morning I called in sick and drove to the nursing home to meet with Dad, my sister and the nursing staff—but not before quickly Googling ‘palliative care’. I knew it had something to do with caring for someone in the later stages of life, but I needed to be versed with a bit more knowledge. I learnt that in a medical setting, it does indeed relate to end-of-life care, where the objective is to relieve pain and discomfort, rather than treat the underlying cause. In other words, palliative care aims to comfort, not cure. So for patients in the final stages of a terminal illness, the course of action is to make them as comfortable and as pain free as possible, until the time comes for them to pass in peace. For the family and carers, palliative care concentrates on providing emotional and practical support before and through the death of their loved one.

  We walked into the nursing home manager’s office and sat down. Nobody spoke for what seemed like an eternity. We were told that Mum had reached the stage where her body was shutting down. We had the option of having a drip put in and feeding Mum intravenously, which could keep her alive indefinitely, or until another condition took over—or we could stop feeding her, administer morphine to ensure she was comfortable, and allow her to pass peacefully in her own time. Decisions don’t come much more intense than that.

  I asked how long ‘her own time’ was likely to be; we were told it could be anywhere from two days to two weeks. I tried to get more of a definitive time line from her.

  ‘So,’ I persisted, ‘do you think it will be two days, or will it be two weeks?’

  ‘It’s hard to tell,’ said the nursing home manager, ‘as it depends on the individual.’

  My mind was racing. What did I have planned for the next two weeks? There was work, of course, which I would just have to deal with, but what about social functions—did my son have any birthday parties coming up? If it happened on a weekend, I wouldn’t have to worry about work or getting our son to and from school … but then sometimes it’s harder to get things done on a weekend. Why can’t they just give us a more accurate time line than somewhere between two days and two weeks—was there an average?

  And when it was time, would we get a 24-hour warning, or will it just happen out of the blue?

  We were reassured we would know when the end was near, and there’d be plenty of time for us to make sure we were with her.

  Well, that was a relief—after thirteen years, I’d hate to miss the actual moment. That would be like staying up all night for Santa, and he arrives just as you fall asleep. Not really, of course—but disappointing all the same.

  We asked a few more questions, before leaving the office. I wasn’t sure of the appropriate exiting gesture after a meeting like this—to say thank you, or shake hands, or a kiss on the cheek? It all seemed a little awkward to be honest.

  Right—there we have it. Thirteen years of dealing with this and it now comes down to two weeks … maximum. I was pretty convinced Mum would fight as long as she could to stick around, so I felt like we had a bit of time to deal with this—to get our heads around it and prepare for what we had es
sentially been preparing for our whole lives.

  We went to Mum’s room and sat down with Dad. I could tell from his face that he had decided it was time. She really had suffered enough, and it was time to let her go.

  I avoiding looking at Mum because deep down, part of me was feeling guilty that we had the power to end her life. We had spent so long hoping for some kind of sign or moment of recognition from her, and now I was too scared to look just in case she did open her eyes. What if she could actually hear what we were talking about, and was trying to give us a sign that she wasn’t ready? Something in my brain was still telling me that maybe a miracle might occur, and if she could just hold on for a while longer, then … what? What could possibly happen to change the outcome of this incurable disease? Is there anything we could have done differently? Could we have tried harder to keep her brain active? Should we have spent more time with her in the nursing home? Should we have done more research into fighting this disease? I definitely should have told her way more often that I loved her. My mind was full of nonsense and I couldn’t think straight. I was a blubbering mess. I was meant to be the strong one who handled things in a calm and calculated manner, but at the age of 47, I was having my 84-year-old father comfort me, saying, ‘It’s time, it’s time.’

  I finally got the courage to sit next to Mum and hold her hand. I just sat there and didn’t speak. I was looking out of the window with the sun streaming through—it was a very peaceful and beautiful moment. I was wondering what Mum would have thought about all of this. How would she have handled it?

  I was only twelve when my nana passed away. During the last few months of her life, my parents kept me from seeing her, as she was sedated and basically just wasting away in a hospital bed. The night my nana passed I had just gotten into bed, probably contemplating which Bay City Roller I was going to marry, when the phone rang and Dad answered. I couldn’t hear what he was saying, but the conversation was short. He hung up, walked into the kitchen and said to Mum, ‘She’s gone.’