TEXTS: Tuesday 18th Nov 2014 – 07.46:
Mum: We meed y6n
Me: Ok. Am coming xxx
I was on my way to work, thinking about the letter I’d posted late on Sunday night, and wondering if they’d receive it today… It was a beautiful morning…blue skies, cold and frosty. My mobile was always switched to silent before leaving home, ready for work. It sat next to me, in my handbag on the passenger seat. I was listening to “calming” music, which was irritating me – I wanted silence, but was afraid of it too… I heard my mobile phone bleep…a text message. I knew it was on silent, as always, so thought my ears were playing tricks on me, and carried on listening to the music… After 2 minutes I decided I just had to pull over to check, and pulled into the car park of a country pub, and checked my mobile. It wasn’t on silent, I HAD heard a text…from my Mum… Certain my father had worsened in the night, afraid he had actually died and panic-stricken because I had desperately wanted him to read my letter before he did, I replied immediately. I didn’t ask what had happened, because I knew I had a 1.5-2 hour drive ahead of me, and that I may well not be able to make it if I knew too much at that stage. So, instead of turning right to work and normality, I headed left to the motorway, not knowing that that was when my life changed completely, in so very many ways. A simple right, to the job which was making me ill… to the left towards my future…and how I craved the normality of the job that made me ill, in the weeks ahead…
Email to a kind colleague 16 November 2014:
How do I know when it’s the time to ask for time to be with my Dad? I’m sorry to ask but I don’t know who else to ask. I’m so tired… He is about to sign a “DNR” form. They’ve changed his care plan to palliative. I’m speaking to his Dr. in the morning. He is so frail. They’re taking a hospital bed round tomorrow because he refuses to go into hospital. Mum has a chest infection. I’m hopeless and useless at illness. I feel totally on my own in handling this and hope you don’t mind me writing to you. He might be here in a month, he might not be here in a week. How do I know what I should do? Do I just wait for the phone call and then go? Can I just leave then, at a minutes notice? It takes 2+ hours to get there from work, more from home.
Email to my line manager 17 November 2014:
I think my Dad might die this week or next. Of course, it might not be for a while longer – maybe even over the Christmas holidays – but my feeling is it’s imminent. My parents have promised to let me know as soon as they need me, and I’ve said I will go immediately; Mum has a chest infection right now, and she has no one to look after/support her. I’m so worried about her too, so, if they ask me to go I will go because I couldn’t live with myself otherwise – they have both been the most amazing parents every single day of my life. I’m really, really sorry to be such a nuisance this year. It’s just so awful that it’s happening at the same time as my own health crisis.
Of course, like many people presented with circumstances such as this, for the next hour and a half as I drove north, I talked to, and bargained with God. “If I can just get there before he dies” I begged. I fantasised how it would be… Like Mum had told me when her own Father died. Just as she walked through the gate in the back yard, propped up in bed downstairs, she saw her father turn his head, look at her, and he died… But I realized that wasn’t enough for me… I had things to say… “Let him read my letter before he dies” I prayed… I didn’t want him to die, but it was inevitable, so I created this image of him lying in bed with Mum’s arms around him, silently reading my letter, my last words to him before he left this world…of me arriving soon afterwards, but too late for his last breath, I decided was good enough… He’d have Mum there with him, as strong as ever, stroking his hair, holding him tight, as he slipped away…so he didn’t need me…my words would be enough. Just before I reached the motorway, I pulled over and texted Mum again: Letter off me to Dad should arrive today please make sure he reads it. Hope I can be there at 10.
On arrival, the scene I walked into was far, far different than the scene in my head… At first glance, nothing was different from the Sunday evening; in fact, everything had changed. Forever. My auntie, Mum’s sister opened the door cheerily… “Oh, hello… I’ll put the kettle on!” she cried brightly…as if her niece who lives 2 hours away often popped in on a week day morning… I followed her down the hallway to the open door of my parents’ bedroom. My father lay in bed, exactly as he had on Sunday evening. Thin. Oh so very, very thin. Skin pulled tightly, very few wrinkles visible now… Watery eyes that looked just like his Mothers; why hadn’t I noticed that before? He smiled, a thin smile. Raised his arm in welcome. He wasn’t dead! He wasn’t dying…no more, at least, than he was on Sunday… Mum sat next to him, propped up with pillows. She started to get up to greet me, but Dad stopped her. That’s when I realized. It wasn’t my Father who had taken a turn for the worse, but my Mother. She was pale… so pale. “I’m ever so sorry” she started to whisper, breathing heavily. She had woken in the night to turn my father, as usual. She couldn’t get her breath – she had angina you see… She had reached for her medication, which was on her bedside table, but it made no difference at all. She just couldn’t breath. Terrified that if she died no-one would know, and my father, bed-ridden, would be left alone next to her dead body, this tiny, tiny 81 year old lady pulled herself off the bed (which was always too high for her) grabbed her mobile phone and dragged herself out of the bedroom and down the hallway to the door, crawling along the floor… She had unlocked the door, somehow…then lay there, trying desperately to get her breath… “Why didn’t you call an ambulance?” I asked. “I didn’t want to bother them”, her typical reply”. “Why didn’t you ring your sister?” (Who lives 5 minutes drive away) “or me?” I asked. “What?!” She asked, indignant… “It was 4 o’clock in the morning! I couldn’t disturb anyone at that time.”So, she had spent the rest of the night struggling for breath lying in the cold hallway, not wanting to “bother” the ambulance service, her sister or her daughter, while her husband was lying awake in the bedroom. Appalled, I asked him “Why didn’t YOU call someone?” “I couldn’t move” he said… It was only then, that I realized that he truly WAS bed-ridden, and not just very, very weak. He was literally trapped there, phone out of reach while the woman he had spent 59 years with was lying in the hallway struggling for breath.
It is only now, writing this down, that I realize just how truly hideous that night must have been for both of them. What I had walked into was relatively controlled, looking back, though it didn’t feel it to me, at the time. Mum propped up in bed, Dad besides her, Aunt and Uncle with them… But those early hours – the darkest hour is just before dawn as they say – how dark were those hours for them? So desperately sad… I think of this as being the day my world fell in. Yet it didn’t fall in as dramatically for me as it did for them! The last few hours together in their beloved home, must have been terrifying for them both…
Suddenly, I realized that all four of them were waiting for me to take charge. Mum said something like “I knew it would be alright once you arrived”… She knew I am a terrible nurse – squeamish, afraid of hospitals and all they entail, blessedly unfamiliar with the routines of serious illness… But, she also knew I am organized and good at managing, and they were all expecting me to manage this unmanageable situation… Why was it unmanageable? Because Dad refused to go to hospital, had been doing so for days; that’s why I’d returned there on the Sunday, after visiting as usual on the Thursday. Mum wouldn’t let me call an ambulance, either. She insisted she’d be alright. When I tried to argue, her still shallow, difficult breathing got noticeably worse as she became agitated, and so I was afraid to call an ambulance.. There was nothing I could do, no way forwards that I could see… Their clock, always loud, seemed to be ticking so loudly I couldn’t think, couldn’t breathe properly myself. What to do? Everyone looking to me, and I had no answer. Panic was raging inside me, but outwardly I had to remain calm and bright, since that’s how everyone else appeared to be…
Never, ever in my entire life have I been so pleased to hear a doorbell ring… To see two people in uniform…occupational therapists who had come to move my father into the spare room, into the hospital bed which, against his wishes, had been delivered and set up the previous day. I wanted to hug them, hold onto them, to cry out with relief… because I hadn’t defied my parents, I hadn’t called anyone. These people had just arrived, delivered to the doorstep by magic or divine intervention (or a prior arrangement, if you must) … but there they were… Angels. When, trying not to sound panic-stricken, I summarized the situation, they insisted on calling the ambulance. They had to. It was their duty – Mum needed oxygen. No argument. They could not leave my parents’ flat without doing that. If in doubt, they must call someone… Thank God for such rules…
It seemed to be only about 15 minutes before two incredibly kind, professional and compassionate paramedics were there in the bedroom… The small bedroom, maybe 8ft x 10 ft, was full… How did we all fit in? Parents in/on their bed… Mum’s sister and brother-in-law, two occupational therapists, two paramedics and myself. My Dad was just lying there unable to move, looking bewildered. Mum following instructions as she was examined. There were voices in the background, over the radio. Taking up most of the room physically and in every other way were the wonderfully kind medics whose names and faces I vowed never to forget, but which I’ve forgotten… I just know they were both very tall, and they knew exactly what to do; they took charge, kept their humour and were assertive without being bullying, calm yet compassionate. I am rarely silent, but was silent, and able to take a step back for the first time since I arrived and to take control of the panic inside me. Listening to Mum’s chest they said they had to take her to hospital to get her checked out, that it wasn’t a bad angina attack, but, more likely, the cancer in her throat, suddenly grown or moved; certainly she was unable to eat or even drink anything that day – she hadn’t told me that. She agreed to go, and Dad didn’t protest… Both thought it would be just for a few hours. Her sister and I found her handbag, packed her inhaler and other medication, plus slippers, nightie, dressing gown and toiletry bag “I won’t be needing them. I won’t have to stay in. I can’t because I’m needed here”. I packed her glasses and her novel, knowing how she was going to hate the inevitable waiting around. My auntie went in the ambulance with her, my uncle went to fetch his granddaughter from work, the occupational therapists went to their next appointment, and I was left alone with my Dad.
Email to colleagues, 8pm Tuesday 18th November:
It’s been the worst day of my life, isn’t over yet, and tomorrow is unlikely to be any better. I want to tell you what has happened because I’m not sure what will happen in the next few days and I hate leaving you in the lurch.
This morning on my way to work Mum texted “we need you” so I drove straight up to the Midlands (100 miles) hoping I’d arrive before Dad died only to find Mum barely able to breathe, and Dad just the same as on Sunday. She was adamant I mustn’t ring 999. Mum’s sister had just arrived and the occupational therapists arrived 10 minutes later – I’ve never been so pleased to see anyone! In the end they had to call a paramedic then an ambulance to give Mum oxygen and then to take her to hospital. It seems she had a severe angina attack in the early hours, crawled to the door to unlock it in case she collapsed, but refused to call 999. She believes it’s the throat cancer stopping her from breathing because today she can’t eat/drink anything at all- she can feel the blockage much more than before. The paramedic was saying something about a “stridor” to the nurse, and I think that’s caused by the throat cancer. Luckily, my poor Auntie went with her to hospital and is still there in A&E with her- they’re admitting Mum when they get a bed. So, I’m staying with Dad because there isn’t anyone else at all. They’re keeping Mum in “for a few days” because they can’t treat her breathing yet because she is severely anaemic again and needs a blood transfusion. I’m not at all sure what they can do to help the breathing because they can’t operate if it is the tumour causing the problems. I can’t even visit her because I can’t leave Dad, and she was so distraught this morning at having to leave him, it was awful. I’m the world’s worst nurse and my Dad the world’s worst patient so it’s a terrible combination. He is totally immobile in bed, cannot even sit up/move, won’t eat, barely drinks. Luckily, I had an emergency overnight bag in the car, with one set of comfy clothes and toiletries, my painkillers, but no laptop charger, the Internet signal is dire (only “E”, no 3G), and there’s no food in the house of course, because neither of them have been eating. (Well, there’s lots of chocolate, I suppose, so perhaps that’s ok…!) I am totally stuck here. I can’t see Mum coming home in a couple of days and I need to persuade Dad to go into some sort of hospital or respite care without sounding callous and uncaring, otherwise I can’t visit Mum. They’ve barely been apart in 59 years and this is such a horrible way for it to end. I knew things were bad… I was prepared, as much as I could be, even for my Dad dying, but the situations not quite the one I anticipated when I set today.
For life and death are one, even as the river and the sea are one.
Khalil Gibran