In much the same way as my (step) Dad had protected us from knowing he had a heart condition at all… (Bio) Dad tried to shield me as much as possible from his own condition. He had known, some months head of us that he was end stage, and had been frequently blacking out from lack of oxygen and poor blood circulation. He had also attempted to hide his deep depression from us, and to some degree had managed. This diary entry was made in February 2011, 2 weeks after I lost the lovely Dad who brought me into the world.
It’s taken me time to post this because my feelings are all still very raw. Two weeks ago, after visiting Dad nearly every day for 6 weeks in hospital, my biological father passed away after a bitter struggle with end stage heart failure. I had been struggling with the hospital to get them to keep my Dad in hospital. Just 7 days before he died, I had been told by the QEQM hospital staff that he was ‘medically fit for discharge‘. He clearly was not to everyone who knew and loved him. My partner was away on a trip to Asia when I got the call from the nurses at 6:47am on a Sunday Morning… A nurse said to me “We think you might want to come in to visit your father now.” It was still dark, so I looked at my clock, and said “I take it you don’t think he’s going to make it through the night?” I think I was in disbelief that I was even asking the question to be honest… Dad had been becoming more and more dependent on my visits to keep him calm, and would call out for me when he was in pain, even if I was not there, end stage heart failure that has been triggered by cardiomyopathy is characterised by panic attacks and I guess I thought that he was having a mad panic attack and that they were calling me so that I could talk him down…
I was clearly in hopeful denial though, because the nurses response was “We don’t know.” I asked her what was happening, and she explained that his blood sugar levels were dangerously low. That was all I needed to hear. I jumped out of bed, was dressed and out of the house having passed my poorly 3 year old daughter into my neighbour’s arms (still in her pyjamas) with a bottle of Calpol and a bottle of Calprufen and I drove at just under 100mph the whole way to the hospital. The drive which normally takes me just under 2 hours in normal traffic took me about an hour. On my way I called my brother, Uncles and Aunt and told them the news…
When I arrived, All my family bar one uncle were by my Dad’s bed, he was cold, extremely sweaty, and gasping for breath. His eyes were closed, but he was clearly in pain and suffering. I rushed to his bed side and took his cold hand, and said “Daddy, I’m here with you now, and I PROMISE you, I am not going to leave your side. I’ll stay right here with you.” He didn’t respond. The nurses had made arrangements to move a patient out from a private side room, so that my Dad and my family could have privacy (and also probably to avoid freaking out the other 5 patients in his ward bay, who were clearly very disturbed by what was going on).
One male nurse, was particularly attentive. He was in and out, attending to Dad non-stop. He kept squeezing tubes of glucose into Dad’s mouth and then coming back shortly later to do a finger prick glucose test and then squeezing more into him. It appeared to be working, but it was making Dad very nauseous. Slowly throughout the day, Dad became more conscious. I asked the nurse in private if my Dad’s internal defibrillator was still active, and with a gravely concerned look on her face, she nodded and said “yes it is, and I think we need to get the doctor down to talk about that with you ASAP”
Unfortunately, being a weekend, there were no proper cardiologists on duty. Dad was in a general clinical ward, not a cardiac specialist one, since they had felt he was not a critically ill cardiac patient when they moved him there. The doctor that appeared looked like he was about 14 years old and was a jack of all trades, but master of none type. He did however say that from Dad’s observations, it was clear that he had taken a distinct turn for the worse, and would be unable to survive a heart attack, and that as such, keeping his defib activated would be cruel, as it would just repeatedly defibrillate Dad until his heart gave up (essentially electrocuting him to death). The cardiac team that could do this properly were unavailable at the weekend, so they had to stick 2 large strong magnets to Dad’s chest to cause interference that would deactivate the defibrillator part of his device.
That night, when the rest of my family left, I stayed, and ‘slept’ in a recliner chair beside my father’s bed. He had several panic attacks (which I was able to soothe him down from), and his blood sugars dropped scarily low again, so they repeated the glucose ordeal until they got him stabilised. I went out at one point when he was stable and asleep and sobbed quietly. I spoke to the nurse on duty and said “He’s not eating or drinking, so I presume that this glucose that is making him feel constantly sick is all that’s really keeping him alive, isn’t it… I presume he’s not going to recover from this?” She looked at me and said “No my love, he’s not.” So I asked her if she thought it was right to keep prolonging his pain and suffering… She responded “Well, we’re nurses, and this is a hospital, so we are duty bound to keep actively treating him, but if it was me, and this was my Dad-I wouldn’t want to put him through it. But the doctors aren’t normally keen to ‘pull the plug’ without the family approaching it. If I was you, I would pin those doctors down in your meeting tomorrow and ask them outright whether they think this is fair.” I crumpled into tears, and she just stood and hugged me with tears in her own eyes… I had never met that nurse before, and I doubt I will again, but she was one of the few who was amazing and I have never needed a hug so much in my life as I did at that moment.
So I lay there that night and just held onto my Dad’s hand, and watched him sleeping. It reminded me of a song that I had been listening to every day on my drive to and from the hospital… The one that my step father had left in his car before he died, just nine months previously (If tomorrow never comes, by Ronan Keating). The words kept playing over and over in my head. There was so much I wanted to say to Dad, but he was clearly fighting for his life and had not come to terms with the acceptance of dying just yet.
When the Cardiologist arrived the next morning, I asked that he see my brother, aunt and I in a private room, and to be honest he didn’t even wait for me to ask the obvious question. He told us that Dad was very close to the end, and that regardless of Dad’s prior concerns, they had to mark on his notes as Do Not Resuscitate (DNR), since he was now so weak that he would not have any chance of surviving the process any way. I asked whether they thought it was fair to keep forcing him to survive on tubes of glucose that were making him gag when he was not eating or drinking, and he said “I actually think that at this point, he is has become completely unresponsive to all treatments, and all we are doing by continuing to actively treat him is to prolong his pain and suffering, I would therefore suggest that we stop all active treatments immediately, and place him onto the ‘Liverpool Care Pathway‘.
A massive part of me felt a weight lift from my shoulders because I didn’t have to ‘ask’ them to stop active treatment for my Dad, and would therefore avoid the inevitable guilt later on (however irrational, I’m sure I would have felt guilty), but I also felt a massive surge of fear, grief, and sadness fill me up… This was it, They were stopping ALL of his heart medication, properly deactivating the device they put in just 9 months previously, and would simply make him comfortable… My Dad would be dead within a week!
However, at that point, I said, well, in that case, I presume that there is nothing to prevent my Dad from access to a hospice bed if there is one available now? If this is the case, can you please get him moved to one ASAP? He agreed to get the palliative care team down to talk to us.
The Doctors wrote my Dad up for a number of drugs, morphine for his pain (but also to help him relax and sleep), midazolam to help relax and sedate him and to calm his panic attacks, another drug to help slow down his breathing, and something else to help dry up secretions. I was relieved… I was so terrified of having to look for the very end (final) stage symptoms which included losing consciousness for half a day at a time without the ability to rouse him, gurgling noises from his throat (this is because their oedema reaches the point where their lungs are so full of blood and fluid that they literally ‘drown’) and fast, shallow panicked breathing… That to me was terrifying-no wonder these poor patients suffer with panic attacks!
So they stopped Dad’s medication, and wheeled in a machine/computer on a trolley to deactivate his device defib… But that afternoon, the strangest thing happened, my Dad brightened up, he sat up in his bed, ate some of the melon chunks I bought him, and had lucid conversations with all of his visitors. It freaked me out and I ran to the doctor to ask if we were making the right decision… Maybe he would get better after all. My partner was with me, and helped mediate between a panicky and irrational me, and the doctors-I dont know how I would have coped without him. The doctors were still adamant that the LCP was the right choice.
My Dad made his peace with everyone that night, he even told most of us that he would be dead within 2 days! That night, everyone went home, except me. I stayed with Dad and we had a very open conversation about him passing away. That was the one privilege that his path of dying gave us, and it was a gift that I will never underestimate. I reiterated that I would not leave him alone, and that I would sleep by his bedside until he had to go, that I would make sure he received the care and treatment that he deserved and that I would help him in his anxious moments (which have always struck him at night).
That night (Monday), I was woken from a brief period of sleep by the sound of a siren going off… In my sleepy confusion I couldn’t work out where it was coming from at first, but then it dawned on me that it was coming from inside Dad’s chest. He had stopped breathing! I squeezed Dad’s hand, and said “DAD? Are you okay Dad?” He did not respond. I ran out to the nurse bay and shouted out what was happening, a nurse came in, but the noise had stopped and Dad was breathing again! I felt very confused. The nurse said she had never heard of any alarm going off in a pacemaker before, and said that Dad’s irregular breathing was probably just sleep apnea. She told me I’d be surprised how common it was for people to stop breathing for long periods when they sleep. The way she looked at me, convinced me she thought I had dreamt the noise.
When she left, I sat with my iPhone and Googled for “alarm going off in pacemaker”, “Alarm going off in defibrillator”, “Audible noise coming from pacemaker”, etc… Not one search was returned, and then I began to doubt myself… Maybe I had just dreamt it?!
In the morning though, when Dad woke, the alarm went off again and this time we both heard it. Dad was totally freaked out! I reassured him that it was nothing to worry about, and that it had already happened in the night, but that I would call the nurse anyway (at least I wasn’t going mad), but I have to admit I was freaked out too… I wondered if it was sounding randomly or whether it was sounding at times when his defibrillator would have been going off, had it still been active… By the time the nurse returned, it had stopped again.
Later, Dad cried out in pain, and managed to muster the strength to shout ‘NURSE!?” I squeezed his hand, pushed the nurse call bell, reassured him and kissed his cheek, and when nobody came, I told him I would get him some pain relief and a nurse. I went out and asked, and they said they’d be along imminently. 15 minutes later, a nurse popped her head in, and said I’m not ignoring you, but Im very busy-I’ll be back shortly. I reassured Dad, though he was pretty much unconscious. 30 minutes later I stormed up to the nurse station, and said “I dont CARE how busy you are-my Dad is dying, you know he’s in pain, and you’ve made him wait almost an hour for relief-if you dont get in there now and give him something, there will be hell to pay!”
The nurse came in, took one look at Dad and said “He looks ok to me, I dont think he needs pain relief” I was furious, and told her he did. She spoke to him and asked him if he did, but he was unresponsive, so she looked at me and shrugged, and out of desperation I said “Dad if you can hear me, and if you are still in pain and you need something, please can you squeeze my hand?” She looked down, and gawked open mouthed as he firmly squeezed my hand TWICE. She returned within moments and administered a shot of morphine and looked very embarrassed. I wont bore you with all the details-but that hospital were consistently bloody awful (with one or 2 nurse exceptions). I remember wiping the floor with baby wipes at one point because my feet were sticking to it, and the wipe was BLACK and fluffy, I also found my dad’s heart medication on the floor or in cups beside his bed when I arrived on several occasions for visits with my 3 year old daughter… JUST AWFUL.
As it turned out, the cardiology worker who deactivated Dad’s defibrilator had made a stupid oversight. They had forgotten to deactivate the failsafe device that alarms the cardiologists if the internal defibrillator has been deactivated by mistake so that they can switch it on again… Clearly, in Dad’s case they should have deactivated this warning alarm, since it was deliberately deactivated. I was so upset that all of that stress about the siren had been completely unnecessary! In the aviation industry, pilots follow check lists for important procedures to avoid errors, but it would seem that in the NHS, there is no such procedure to protect patients from unnecessary distress and suffering!
THANK GOD, he was ambulanced to the hospice later that Day. I will never forget the feelings that I felt watching my unconscious Dad being strapped to a bed, wheeled out into the sunshine, transferred into the ambulance, and sitting in the ambulance with him for the 30 minute drive to the hospice. I felt numb, then overwhelmed, then detached, then sad, then angry… Just a whole mix of stuff… Knowing that Dad had already been to the last nativity play of my son, had his last Christmas in hospital, would never forget to send me another birthday card, etc, etc..
We arrived at The Pilgrims Hospice in Canterbury, and from that moment forward, Dad’s care was beyond amazing. In fact, I dont think you could call what they gave my Dad ‘care’ so much as ‘love’. It didn’t matter that he was in a morphine coma, if they needed to move him, or wash him, they would gently stroke his face and softly say his name with a questioning tone, and then ask his permission to do it. If they got no response, they would say okay then Mr name removed we’re just going to do this for you… There was no waiting if I pushed a call bell, and they couldnt do enough for Dad. They were in checking on him (and me) every 20 minutes and took time to explain everything to me, and offered me emotional support, counselling, a chaplain, etc. The facilities were spotless and their attitude was above and beyond what they could have been paid for.
The dignity and respect they paid him filled my heart so much that I cried silently. I wished to God he had got there sooner, whilst he was still more with it. Having seen it with my own eyes, I can’t believe I worried about sending Dad there-if ever my time comes, I KNOW for a fact that I would rather die in a hospice than even at my own home! That first night, my whole family came in, and we wheeled Dad’s bed up to the chapel of rest, and my uncle brought his guitar (he is a professional musician, and even had a number 1 hit ‘back in the day’)… We played music, sang to him and we all toasted him with the brand of Scotch that he always enjoyed drinking. It was quite bizarre, but really lovely.
That is the memory of the hospice I want to hold onto. Unfortunately, Dad barely opened his eyes, but managed every now and again, and squeezed my hand for the first day and a half-it was our code for “I love you.” I slept in there for 2 nights with him. He surpassed all of the hospice staff’s life expectations, and I began to wonder what he was holding on for . On his last night there, I sang ‘If Tomorrow Never Comes” to him softly whilst we were alone together, and I told him that I loved him, and that there was no doubt in my mind that he loved me too… I told him that it was ok to go, and that we would all be ok, and of course we would miss him, but we would support each other, and that I would help look after his Mum.
His mum rang that night, and I put the phone to his ear and she told him that he looked very handsome in his bed the previous night, and she was pleased that his face had a lovely colour again, and that his hands felt lovely and warm again. He opened his eyes and said “Heo” which I know was him trying to say “hello”. It was the last time that he opened his eyes or said anything.
The next day, for the first time since he had been placed into the LCP palliative care, he was left without a direct blood relative for 15 minutes… My brother and partner convinced me to go out for fresh air, and my brother went to collect Grandma to bring her in. My sister-in-law stayed and that is when he slipped away. I believe that is what he was holding on for. He had finally accepted that it was his time, and his fear was removed because of the palliative care and medication, and I believe he wanted to spare his siblings, mother and children the emotional trauma of witnessing his passing.
This time, thank God, my partner was there to support me. He was meant to be on a plane when it happened, but thanks to the knowledge of where Dad was at, he was able to get compassionate leave to be there for me. Twice in 9 months… I still can’t believe that having been lucky enough to have 2 men I called Dad in my life, that I have now lost them both… Gone but not forgotten. I love you always Daddy xxx
Though my Dad’s illness was characterised by panic attacks, this was a symptom of his heart condition, and not because he was in any way weak. This was a condition that he lived and suffered with from his early/mid 40s and had understood his awful prognosis for just under TWO DECADES. He always believed he was weak because he suffered with the panic attacks and depression, and because he feared his death; but the truth is that few of us in that position could have coped better, especially as he a single man without support of a partner or spouse. Despite his disability, he visited his elderly frail Mum daily for the past 8 years of his life and either took her out shopping or for Sunday lunch (or more often than not-for both) every week in addition to attending to any other needs she had. He was one of 4 children. In the end-my poor Grandma out-lived him, by exactly 1 year and 9 days… As an aside, my Grandma saw my Dad by her bedside for the last 4 days of her life!
Dad inspired me, because he suffered with a debilitating illness that robbed him of his youth, virility and mobility, yet he managed to help others in spite of it. He had strong morals and ethics and always went out of his way for others even though he was barely well resourced enough to care for himself.
He gave me perhaps the greatest gift of all by allowing me to be there for him in his hours and days of need, at the end of his life. He made me feel that my role in his life was vital, and he appreciated my effort. He allowed me to realise that I had a special gift to help others when they were struggling with fear, even though I struggled with my own fear at the same time and I felt
important essential to him.
Most of all he demonstrated to me that it is important not to take my future for granted, and to soak up the good in my life whilst I have the ability to do so. As I write this, I myself have been in bed ill for 4 weeks. Its nothing serious, I’ll get over it, but it is still an opportunity! In this time-I have read books that I have not had time to read, I have caught up on rest that I rarely get, and I have taken time to reflect on life… Even when you do not have your health-life still presents you with opportunities that may not otherwise be available to you.