Death is a fact of life, yet we never talk about it. What happens, not just to the person who is dying, but everything around the death? What needs to be done, who do you need to tell, what is it like to have a close relative die? There is not much out there about this, and we tend to avoid the whole subject, referring only to death euphemistically. He kicked the bucket; he is at rest; he has passed; he is gone. The D word is not mentioned. And yet, death is a fact of life.
My dad died a year ago last May. And I wanted to record some thoughts, an observation of a death so to speak.
I guess I should go back from when he died to a year before. He was diagnosed with idiopathic pulmonary fibrosis. This basically means that he had growths or scaring (fibrosis) on his lungs. That meant that his breathing was impaired which led to other side effects including chest pain, aches, tiredness and more.
He found out that the average life expectancy, from diagnosis was three years. This was a shock to both him and my mum. He dealt with it, like most of us do, by denying what was happening. What this meant though was that both he, and especially my mum, thought he had at least three years. I spoke to a friend who was a physiotherapist and who had dealt with this condition before. Her thought was that three years might be the average, but it was often a lot less than that. Three years included people who were 20, 30 or even 40 years younger than my dad and otherwise in excellent health. My dad’s health wasn't bad, but he was turned 80 and it was clear when we met up that he was failing. I realized we didn't have that long. Nonetheless I had the same bury your head in the sand as my parents. They didn’t want to know that death was imminent, and I didn’t want to contemplate it, or worry them. I guess imminent death doesn’t seem real, death can’t happen, not to me, not to someone I know. It never seems like something like that would happen. Even now it still doesn't really feel very real.
Moving forward to May 2020. The country was in full lockdown and I had not seen my parents since February (I don’t live close to them). My mum phoned me up to tell me my dad seemed to be struggling with breathing and chest pains. I advised her to call a doctor, which she eventually did. Someone came round and took some blood for tests. They heard nothing back. I suggested calling the doctor again, or even an ambulance. Given that the news was full of the NHS being overwhelmed, it was hard to persuade either of them that it was appropriate to ask for a doctor. However, a doctor came in on Monday morning. He ran some tests and called an ambulance. My dad was taken to hospital. On admittance to hospital, they said he had pneumonia. He was put on strong antibiotics and steroids to try to address it. I was still at home, feeling a long way away, although we were told at that time we could not visit him, as he was on a Covid ward.
The antibiotics and other treatments didn't work. We got a call on Thursday to say that we could go to see him, as he was not expected to last the night. My mum has not driven for years, so it was up to me to drive over to her house and then over to the hospital. I live about an hour and a half away from my parents and the hospital was 30 minutes drive from there. I set off to go over as soon as work was done and I took her to the hospital. Although the ward had mostly Covid patients on it, my mum was allowed to see my dad, as he was Covid free. It was the first time my mum had left the house for a long time. She hadn’t been shopping or anywhere where the realities of lockdown could be experienced and thus they were alien to her. It was a time before mask wearing was required, but still cleaning hands before and after going into the ward was new to her, and the full cover get up she had to wear confused her further.
That night I sat outside the ward just waiting. I observed what was going on around me and tried to do some work – it was a good distraction. One of the things I remember were two porters who were pushing a trolley out of another Covid ward and discussing the need for more body bags because they had completely run out. I guess that moment stuck with me as it showed the times were unusual. Quite simply there were more bodies than normal.
My mum came out and we drove home. Despite being told that was probably the last time we would see him, the next day he was still alive. I repeated my driving after work from the day before. I look back now and wonder why I was so keen to ensure I was putting in a full day of work. My dad was dying, and work was offering me some more time off to deal with things. The only thing I think now is that work provided me with a sense of normality and distraction from the whole circus of death.
That night when we went into the ward we saw the consultant. A youngish man who was very pleasant. He explained the antibiotics were not working and anything more would cause his kidneys to shut down. I knew my dad had had a negative Covid test, but still wondered if that could be a false negative, given that Covid was such a common thing then. The consultant explained that with Covid, the damage to the lungs was all over the lungs, whereas with pneumonia the damage was mostly at the bottom of the lungs, and the differences could be seen very clearly on x rays. He explained that my dad’s lungs were filling with fluid, and he had the start of a sepsis infection. He was given morphine, so was in no pain, but he was struggling to breathe. The consultant emphasized that he would authorise for myself and my brother to see my dad as well as my mum.
That night my mum visited my dad first, then I went to see him. I had not seen him since pre lock down in February. He had changed and appeared shrivelled, sunken, old man. I could see it was my dad there, but he wasn't my dad. I remember talking to him, and getting no response, I held his hand, but it was cold and felt lifeless. His toes were sticking out the end of the bed and were black with yellowing claw like nails. His head had a thin veneer of skin over the skull and his eyes remained closed. I thought that he was completely unaware that I was there. I remember crying and feeling so guilty as I was mourning for someone not yet dead. The only comfort was feeling that he wouldn't even know that I had been there let alone crying.
Again, I drove home and back to work. The next day, he was still alive, so I returned to take my mum and my brother to the hospital. My brother is autistic, so often doesn’t respond to thing in the way people expect him to respond. He also struggles with self-care and personal hygiene, and at the time was sporting a rather extreme and shaggy beard. Admittedly he bears a resemblance to Captain Caveman, which means people can be wary of him. We had explained this to the consultant, but he, along with us felt that was even more reason that my brother should see my dad. I explained to the nurses that he had autism, although given his behaviour I don't think that needed to be explained! He went in to see my dad with my mum. I was not there, but my mum said he spent most of the time telling my dad that there's no such thing as death, you simply pass to the next plain and that dad was doing that as he spoke.
My brother stayed with my dad for about 10 minutes and came out. He then told me that he was going to go for a walk and find the chapel so that he could perform rituals to ensure that that dad didn't die. I think that's the only way he can cope with the concept of death. He started to become obsessed with spiritualism after our Grandmother died. I think he need to believe that death isn't real, to believe that it is just another step. Being autistic he can take this a little far. He frequently talks to people who have died, including our grandmother, and has loud arguments with them. He believes that he is our other grandmother (who died before he was born) reincarnated. At this point I felt that letting him go to the Chapel was probably a good idea.
I stayed outside the ward and soon a tall woman bustling in a bright red nurse's uniform came over to me and asked me if that “man” was my brother. I answered in the affirmative, expecting an onslaught. I was not disappointed. She told me that he wasn't welcome on the ward and he would not be allowed back. She said that his behaviour was far too unpredictable and dangerous. I asked what he had done wrong. She could not answer this but told me as the ward was for Covid patients no one else was allowed in and as nurses, they were very careful to only go home to their families, to work and essential shopping. She didn’t know where he had been, but he could be carrying the virus. I responded explaining that he was autistic. This meant unlike her nurses he did not mix with people at work, and very rarely went shopping. Given the nature of autism he would never get too close to people no matter what. So, both myself and him had far less interaction with people than they had. I also explained the consultant said he could visit our dying father. ”He’s new. I will have to have a word with him and explain how things are on MY ward” was her retort. She strode away. I didn’t tell my mum or brother about this interaction, worrying it would upset them.
Given that we've been told the dad was unlikely to survive Thursday night, it was now Saturday night. So we kind of felt he wasn't doing too badly, and maybe the news of his imminent death was just a rumour. I drove home back to a day of work. On the Sunday, he had been asking for us, telling the nurses that they needed to phone my mom and phone me so that I could give my mom a lift to see him. On the Sunday, I went in and I saw my dad again. His breathing was a bit worse; you could hear him rattling. Again, he didn't appear aware of me or able to talk. We arranged for his sister and her family to be able to talk to him via a hospital online video system. I am not totally sure he was aware of things, but I suppose at least they got to see him.
One thing I noticed was that no one mentioned the D word. At no time were we or my dad told he was dying. “we are making him as comfortable as possible” “we have exhausted possibilities” “he is not responding to treatment,” “there is no more to be done.” I felt this didn’t help us. My dad never mentioned or made any comment about dying. He was asking to go home, as he would feel better there, and be able to recover quicker. I am not sure if he was ignoring the inevitable, or if he really didn’t understand. I read several studies showing that these euphemisms were important for the medical professional’s mental health, but it made me feel that I wanted to yell at them “HE IS DYING, DEATH comes, DEAD, DEATH, DYING just say it!” It created an atmosphere of rarefied emptiness where the inevitable was not addressed and questions were never answered.
Positioned outside his room was a large board with the names of everybody in the ward. There were around 20 names one it the first time I saw it. Next to each name was a positive or negative sign indicating if they had Covid. Next to my dad's name, it was negative. Also, next to several of the names were purple butterflies. There was a purple butterfly next to my dad's name. I didn't ask, but it was clear that these purple butterflies were next to the names of people who were not expected to survive – a ward euphemism. Every time I went in there some names had disappeared from the board, to be replaced with others. The purple butterflies moved from the deleted names and settled next to new names, some were quickly deleted. Others remained the full time my dad was in there.
On the Monday night, he was breathing very badly. Every breath was exhausting him and gargled with the fluid filling his chest. It was awful to hear him. This time I was allowed in with my mum (we had asked my brother to come, but he chose not to). I think dad squeezed my mum's hand. By that time, he sounded so awful, and his breathing was so bad that it just seemed horrible for him to survive. I drove my mum back home, and I slept on the floor of my old bedroom. At seven o'clock in the morning, we were woken by the phone ringing to tell us that he had died.
I think one of the worst things about it was that he was dying, in hospital, alone. I know those with Covid were so much worse – they did not even have the nightly visits. I was trying very hard to work and keep that and my home life separate from the hospital and my dad, just to keep my own sanity. It does seem silly now. I should have taken the time off, but I am not sure if the circumstances came again if I would act any differently.
My dad died a year ago last May. And I wanted to record some thoughts, an observation of a death so to speak.
I guess I should go back from when he died to a year before. He was diagnosed with idiopathic pulmonary fibrosis. This basically means that he had growths or scaring (fibrosis) on his lungs. That meant that his breathing was impaired which led to other side effects including chest pain, aches, tiredness and more.
He found out that the average life expectancy, from diagnosis was three years. This was a shock to both him and my mum. He dealt with it, like most of us do, by denying what was happening. What this meant though was that both he, and especially my mum, thought he had at least three years. I spoke to a friend who was a physiotherapist and who had dealt with this condition before. Her thought was that three years might be the average, but it was often a lot less than that. Three years included people who were 20, 30 or even 40 years younger than my dad and otherwise in excellent health. My dad’s health wasn't bad, but he was turned 80 and it was clear when we met up that he was failing. I realized we didn't have that long. Nonetheless I had the same bury your head in the sand as my parents. They didn’t want to know that death was imminent, and I didn’t want to contemplate it, or worry them. I guess imminent death doesn’t seem real, death can’t happen, not to me, not to someone I know. It never seems like something like that would happen. Even now it still doesn't really feel very real.
Moving forward to May 2020. The country was in full lockdown and I had not seen my parents since February (I don’t live close to them). My mum phoned me up to tell me my dad seemed to be struggling with breathing and chest pains. I advised her to call a doctor, which she eventually did. Someone came round and took some blood for tests. They heard nothing back. I suggested calling the doctor again, or even an ambulance. Given that the news was full of the NHS being overwhelmed, it was hard to persuade either of them that it was appropriate to ask for a doctor. However, a doctor came in on Monday morning. He ran some tests and called an ambulance. My dad was taken to hospital. On admittance to hospital, they said he had pneumonia. He was put on strong antibiotics and steroids to try to address it. I was still at home, feeling a long way away, although we were told at that time we could not visit him, as he was on a Covid ward.
The antibiotics and other treatments didn't work. We got a call on Thursday to say that we could go to see him, as he was not expected to last the night. My mum has not driven for years, so it was up to me to drive over to her house and then over to the hospital. I live about an hour and a half away from my parents and the hospital was 30 minutes drive from there. I set off to go over as soon as work was done and I took her to the hospital. Although the ward had mostly Covid patients on it, my mum was allowed to see my dad, as he was Covid free. It was the first time my mum had left the house for a long time. She hadn’t been shopping or anywhere where the realities of lockdown could be experienced and thus they were alien to her. It was a time before mask wearing was required, but still cleaning hands before and after going into the ward was new to her, and the full cover get up she had to wear confused her further.
That night I sat outside the ward just waiting. I observed what was going on around me and tried to do some work – it was a good distraction. One of the things I remember were two porters who were pushing a trolley out of another Covid ward and discussing the need for more body bags because they had completely run out. I guess that moment stuck with me as it showed the times were unusual. Quite simply there were more bodies than normal.
My mum came out and we drove home. Despite being told that was probably the last time we would see him, the next day he was still alive. I repeated my driving after work from the day before. I look back now and wonder why I was so keen to ensure I was putting in a full day of work. My dad was dying, and work was offering me some more time off to deal with things. The only thing I think now is that work provided me with a sense of normality and distraction from the whole circus of death.
That night when we went into the ward we saw the consultant. A youngish man who was very pleasant. He explained the antibiotics were not working and anything more would cause his kidneys to shut down. I knew my dad had had a negative Covid test, but still wondered if that could be a false negative, given that Covid was such a common thing then. The consultant explained that with Covid, the damage to the lungs was all over the lungs, whereas with pneumonia the damage was mostly at the bottom of the lungs, and the differences could be seen very clearly on x rays. He explained that my dad’s lungs were filling with fluid, and he had the start of a sepsis infection. He was given morphine, so was in no pain, but he was struggling to breathe. The consultant emphasized that he would authorise for myself and my brother to see my dad as well as my mum.
That night my mum visited my dad first, then I went to see him. I had not seen him since pre lock down in February. He had changed and appeared shrivelled, sunken, old man. I could see it was my dad there, but he wasn't my dad. I remember talking to him, and getting no response, I held his hand, but it was cold and felt lifeless. His toes were sticking out the end of the bed and were black with yellowing claw like nails. His head had a thin veneer of skin over the skull and his eyes remained closed. I thought that he was completely unaware that I was there. I remember crying and feeling so guilty as I was mourning for someone not yet dead. The only comfort was feeling that he wouldn't even know that I had been there let alone crying.
Again, I drove home and back to work. The next day, he was still alive, so I returned to take my mum and my brother to the hospital. My brother is autistic, so often doesn’t respond to thing in the way people expect him to respond. He also struggles with self-care and personal hygiene, and at the time was sporting a rather extreme and shaggy beard. Admittedly he bears a resemblance to Captain Caveman, which means people can be wary of him. We had explained this to the consultant, but he, along with us felt that was even more reason that my brother should see my dad. I explained to the nurses that he had autism, although given his behaviour I don't think that needed to be explained! He went in to see my dad with my mum. I was not there, but my mum said he spent most of the time telling my dad that there's no such thing as death, you simply pass to the next plain and that dad was doing that as he spoke.
My brother stayed with my dad for about 10 minutes and came out. He then told me that he was going to go for a walk and find the chapel so that he could perform rituals to ensure that that dad didn't die. I think that's the only way he can cope with the concept of death. He started to become obsessed with spiritualism after our Grandmother died. I think he need to believe that death isn't real, to believe that it is just another step. Being autistic he can take this a little far. He frequently talks to people who have died, including our grandmother, and has loud arguments with them. He believes that he is our other grandmother (who died before he was born) reincarnated. At this point I felt that letting him go to the Chapel was probably a good idea.
I stayed outside the ward and soon a tall woman bustling in a bright red nurse's uniform came over to me and asked me if that “man” was my brother. I answered in the affirmative, expecting an onslaught. I was not disappointed. She told me that he wasn't welcome on the ward and he would not be allowed back. She said that his behaviour was far too unpredictable and dangerous. I asked what he had done wrong. She could not answer this but told me as the ward was for Covid patients no one else was allowed in and as nurses, they were very careful to only go home to their families, to work and essential shopping. She didn’t know where he had been, but he could be carrying the virus. I responded explaining that he was autistic. This meant unlike her nurses he did not mix with people at work, and very rarely went shopping. Given the nature of autism he would never get too close to people no matter what. So, both myself and him had far less interaction with people than they had. I also explained the consultant said he could visit our dying father. ”He’s new. I will have to have a word with him and explain how things are on MY ward” was her retort. She strode away. I didn’t tell my mum or brother about this interaction, worrying it would upset them.
Given that we've been told the dad was unlikely to survive Thursday night, it was now Saturday night. So we kind of felt he wasn't doing too badly, and maybe the news of his imminent death was just a rumour. I drove home back to a day of work. On the Sunday, he had been asking for us, telling the nurses that they needed to phone my mom and phone me so that I could give my mom a lift to see him. On the Sunday, I went in and I saw my dad again. His breathing was a bit worse; you could hear him rattling. Again, he didn't appear aware of me or able to talk. We arranged for his sister and her family to be able to talk to him via a hospital online video system. I am not totally sure he was aware of things, but I suppose at least they got to see him.
One thing I noticed was that no one mentioned the D word. At no time were we or my dad told he was dying. “we are making him as comfortable as possible” “we have exhausted possibilities” “he is not responding to treatment,” “there is no more to be done.” I felt this didn’t help us. My dad never mentioned or made any comment about dying. He was asking to go home, as he would feel better there, and be able to recover quicker. I am not sure if he was ignoring the inevitable, or if he really didn’t understand. I read several studies showing that these euphemisms were important for the medical professional’s mental health, but it made me feel that I wanted to yell at them “HE IS DYING, DEATH comes, DEAD, DEATH, DYING just say it!” It created an atmosphere of rarefied emptiness where the inevitable was not addressed and questions were never answered.
Positioned outside his room was a large board with the names of everybody in the ward. There were around 20 names one it the first time I saw it. Next to each name was a positive or negative sign indicating if they had Covid. Next to my dad's name, it was negative. Also, next to several of the names were purple butterflies. There was a purple butterfly next to my dad's name. I didn't ask, but it was clear that these purple butterflies were next to the names of people who were not expected to survive – a ward euphemism. Every time I went in there some names had disappeared from the board, to be replaced with others. The purple butterflies moved from the deleted names and settled next to new names, some were quickly deleted. Others remained the full time my dad was in there.
On the Monday night, he was breathing very badly. Every breath was exhausting him and gargled with the fluid filling his chest. It was awful to hear him. This time I was allowed in with my mum (we had asked my brother to come, but he chose not to). I think dad squeezed my mum's hand. By that time, he sounded so awful, and his breathing was so bad that it just seemed horrible for him to survive. I drove my mum back home, and I slept on the floor of my old bedroom. At seven o'clock in the morning, we were woken by the phone ringing to tell us that he had died.
I think one of the worst things about it was that he was dying, in hospital, alone. I know those with Covid were so much worse – they did not even have the nightly visits. I was trying very hard to work and keep that and my home life separate from the hospital and my dad, just to keep my own sanity. It does seem silly now. I should have taken the time off, but I am not sure if the circumstances came again if I would act any differently.
