18.30 30th June 2011
The phone rang and I knew who it was and what the call was about before even answering. I was shaking with fear, unable to speak properly as I pressed the answer button on the phone.
“He….ll….o” was how I managed to answer sounding like a man who had not only swallowed glass but was having it slowly pulled back out from his mouth piece by piece.
“Mr Williams?, This is Dr X from ICU at Whipps Cross Hospital your uncle does not have long left you need to come down now if you want to say goodbye!”
Over a year later and I can still remember that phone call vividly, reaching for a cigarette I thanked the Dr for the call and tried desperately to light the cigarette and stop the tears that were waiting to explode out of my eyes. I couldn’t cry I did not want the kids to see me in that state and so eventually I managed to find the strength to get dressed and head into my new found hell on earth.
I stumbled down the stairs alone with my thoughts and the tears flowing rapidly, racing to the hospital which although only 5 minutes drive away seemed to take forever to reach, every traffic light was red, every car was slower than normal. Trying to compose myself I found a place to park, paid the meter and made my way into the hospital. Pressing the buzzer to gain entry into the intensive care unit took all the strength I had, the temptation was to not go inside but to run away and pretend this was not happening.
The voice on the intercom asked who I was and when I explained she let me in and asked me to go into the waiting room. Twenty minutes I was forced to sit there in silence before someone came to see me, 20 minutes spent reflecting on how things had come to end like this. Anger that I could not do more, or enough to stop this from happening, anger at being let down by the very place that was meant to save him, anger that the medical professionals who I had turned to over the past 2 years had done nothing except write another prescription, admit when the ambulance was called to his flat (on numerous occasions!) and discharge as quickly as possible without looking deeper into the problems.
Finally the nurse came to speak to me and informed me that I was too late, that my uncle had passed away. He was 76 years old, not really old in today’s terms is it? I did not get the chance to say goodbye to him, to thank him for everything he had done for me, to tell him how much he meant to me and to say sorry for not doing more.
His health had declined over a 3 year period due to Diverticulitis and depression, the latter being the biggest problem as he had been on medication for years and years! For the last years I was, for all intents and purposes, his carer and was there 5/6 days a week, especially towards the end where I had to do everything for him as he could not find the strength to do it.
During this time he was admitted to hospital on an almost monthly basis and each time we was told that there was nothing wrong with him, that he was not in constant pain and that it was probably more psychosomatic than real pain. Imagine how that must of made him feel.
He felt like he had been deserted, that no one wanted to help him and that he was being passed from pillar to post because nobody believed his pain was real. He did have a lovely, understand specialist for his Diverticulitis who he was comfortable around and could talk to without feeling like he was mad but this specialist died suddenly of cancer and my uncle was once again stranded between doctors and units not communicating with each other.
His GP was no help, despite being the “Mental Health Specialist” in the surgery. His idea of helping my uncle was to just write out a prescription and make him come back 2 weeks later. My Uncle couldn’t sleep but he wouldn’t give him sleeping tablets on a regular basis. He was weak, exhausted and losing weight yet no one tried to work out why he was any of these things! Looking back now it makes me so angry that I was not more forceful with his GP but I did not know any better.
Things started getting so bad that soon my uncle was losing his voice and could barely be heard when he spoke, again never investigated. I was getting phone calls at all hours from him desperate for me to come over and keep him company, he even threatened to take all his tablets if I did not go. I told his doctor about these threats and even told the staff at Accident and Emergency about my concerns with his mental state and what did they do? Send him home that’s what! Who was the next of kin they called to collect him? Me that’s who! It got to the point where I would not answer my phone or return their call until the following morning so I knew he would be looked after and I could at least get some sleep!
He was barely eating so I used to get him food from the supermarket and even bought a microwave to help him cook easier but unless I cooked the food for him he would not eat. He got so weak he could barely get out of bed so it was no surprise when I got a call from him saying the new tablets his GP gave him were making him light headed and dizzy.
Then one day he rang me to say he had fallen in the night and when I got to his flat he was laying in bed with a gashed head so I called an ambulance and he was taken to hospital once again. A cut head that needed stitches that was all he went in for….He never came home!
So here is where I get angry, confused and riddled with guilt. How can he go into hospital needing a head wound treated and not come out alive?
He picked up an infection in the ward he was placed in as I had requested a weekend stay for him as I was unable to be around for him and there was no one else to look after him. So that was not strictly true as I was around that weekend but at the end of my tether with the whole situation and was hoping for a mini break from the stress I was under. I guess I feel guilty that he caught that infection because I couldn’t handle the pressure of another weekend of dealing with him. I had my own demons to deal with and selfishly tried to deal with them leaving him alone in a hospital bed!
The infection caused him to have a heart attack and he was then placed into a coma as he kept trying to remove the tubes that were helping to keep him alive. He was placed into the intensive care unit and had to have a tracheostomy so was now unable to speak and was being kept alive by ventilators. I had to talk to the specialists about resuscitation and make the decision if it came down to it! The Doctor I spoke to was a gentleman though who put me at ease despite knowing the state of shock I was in and assured me a decision would be made based on “quality of life if revived”
I saw him on the Thursday before he died (29th) and sat with him for a couple of hours trying to tell him how worried people were, how much we missed him and how we needed him to be strong and start fighting back. When the time come to leave I said goodbye and that I would be back the next morning. I have gone over the look he gave me before in other posts but I knew then that he had given up and was using his eyes to say goodbye to me. He was in hospital for around 2 weeks and I had visited him every day sometimes twice a day so he wouldn’t feel alone, even though he wouldn’t have known I was there for most of the times I hated the idea of him waking up and someone not being there for him.
That brings us back up to 30th June and the phone call.
The last words he spoke to me were “Come round please Garry, I had a fall in the night and need you”
The reality is that I had done everything that I knew what to do, I was not as well versed in depression as I am now and could not fight for better treatment as I did not know what was available for him. I did get him some help in the form of care workers who would go around to him in the morning and afternoon but he would refuse to let them in his flat. “They are not helping me, they don’t care” was his argument heaping more pressure onto me. Now please don’t get me wrong I loved helping him and being there for him but some days I could not deal with my own battle, which was still invisible to the outside world, and his health problems.
Did I take on too much? In hindsight probably but he did not have anyone else so what could I do?
Imagine then having to call people and inform them of his passing away. Ringing my Nan, his sister, to tell her that her youngest brother had died broke my heart in ways I could not even try to explain! I was numb I could not go home yet. I went back to his now empty flat and sat there for a few hours with a neighbour of his and tried to gather my thoughts. Just sitting there gave me a form of comfort in a strange way and did help me but I knew there were a lot of things to deal with now, arranging the funeral, clearing out his flat and dealing with his finances. That in itself is another story for another day maybe but not as hard as all of this!
I have never spoken about a lot of this to anyone and I suppose in a way I am still grieving but I feel more anger than anything else because now I know I could have done more.
That is why I wish I could say sorry!
I take some relief from knowing he is no longer suffering and in a better place but I can’t help but feel it could and should have been prevented.
As a tribute to him, and another uncle who died in 2000, I got a guardian angel tattoo on my forearm so I can feel like he is always besides me, looking out for me and trying to guide me on the right path, whatever that may be.
And the moral to this tale of woe? Don’t ask me “what do you have to be depressed about?” unless your ready to know one of the reasons in all its glory.