The humans behind the numbers – Justine’s story

Photo by  Daan Stevens  on  UnsplashPhoto by  Daan Stevens  on  Unsplash

Photo by Daan Stevens on Unsplash

Dad died on 7th April. He had dementia – a younger person’s dementia – he was 72 when he died, he started showing symptoms of his dementia in 2006 when he was 58. He had been in the care home for a year before he died. He was fit and healthy in himself; he had no heart or lung problems or anything like that. Then covid-19 came into the care home and literally a few days later he was dead. On his death certificate it says covid-19 but he was never tested. 

It’s not like the care home wasn’t trying; on 2nd March they were sharing their infection control policy and making sure people knew that they were aware of what was happening. On 11th March they started doing staff temperature checks, then from the 18th March they started the lock down, so no family could visit from that point; none at all. On 30th March they had their first cases of covid-19 confirmed; two residents and six staff had tested positive. 


Dad started showing symptoms on 2nd April, vomiting and a slight temperature, nothing huge, but I was told that they were not going to be doing any further tests, Public Health England were not allowing any further tests in the care homes, so they were just isolating these elderly people in their rooms and doing their best. 

On 5th April he took a slight turn for the worst, nothing major. I was told that the GP would be reviewing him tomorrow. I had to ask if they had any pain relief? Did they have any sedation in case he got worse? They said no, if that happened they would call 111. So I said “so my Dad could be agitated and in pain until you can get medication?” and they just replied “yes”. The next day he deteriorated and was anxious and agitated, and they gave him morphine.

The day after, on the day he died, in the morning he wasn’t doing too badly, and then suddenly the acute respiratory failure happened. His oxygen levels plummeted, his breathing rate massively increased, and he was dead by 7pm. It was just a matter of hours. Literally the day before the GP had said it was probably another virus because his symptoms didn’t match covid-19, and then the next day he was dead.

We had signed a declaration in December saying we didn’t want Dad to be resuscitated or to go to hospital for investigations if he got sick; for any illness. I felt it was all very futile, because he had no quality of life any more, he couldn’t even speak anymore.  My thoughts were “What are we trying to save here? We are not trying to save Dad, we are trying to save a shell.”  But we weren’t allowed to be with him, and to this day I don’t know if he was alone or not, and I don’t want to find out, in case he was. And that is something I can’t bear thinking about’.

Justine and her two brothers lost their Mum a few years before to multiple sclerosis. 

Compared to my mum who literally had us all around her bed in her dying moments, stroking her, kissing her hair, there was Dad in this care home, with staff run ragged; how could they have given him their full attention? Because they had a lot of very sick vulnerable people to look after at the time he died.

It was absolutely awful. Six staff were off with symptoms, the nurse that I spoke to that morning sounded hysterical, it was clearly very tough there from her tone of voice. And the only PPE they had was surgical masks, even though they had confirmed covid-19 in the home. They didn’t have anything proper to protect them; they were just dealing with dying people who couldn’t be with their families.

We weren’t able to view Dad’s body, and there are other little things that are different like not getting to pick the clothes and makeup of people who have died.  Dad had to be in a funeral director’s gown. So, there was no dignity; all the little bits of dignity were taken away. There was no being carried into the chapel for the funeral, his coffin was taken in on a trolley before we could enter the building and everyone had to stay two metres apart.

There weren’t allowed to be more than ten people at the funeral. Because a lot of people are dying, you have got 32 minutes for the service; it was really precise. It was literally down to ‘it will take 24 seconds for the curtains to close”. Again, it was so different to when Mum died, and the days leading up to her death, because we knew she was going to die, we always had her favourite music playing, so we had time to think about it.

And after she died, we just sat together for a few days listening to different music, looking at photos, sharing memories, all of that helped you put a service together. With Dad, it was like, okay, we have got time for a eulogy, we now have to cram 72 years of life into five minutes. My brother wrote the eulogy and it was beautiful. We did pick the music, but we really had to push for songs to be played in full; you don’t want snippets.

All of the preparation for the funeral was over facetime, over Zoom, it was just really weird. There was no real communication, and it was a real headache, we couldn’t sit down together and make decisions. Apart from the eulogy and the music we were told how it was going to be. 

Even picking up the ashes, which I did yesterday, I wasn’t allowed to ring the doorbell of the funeral directors, I had to wait for them to see me. I then had to step back and they put this box of ashes on a table, all done outside, and then they leave the table, then I go and pick it up.

Those rituals just aren’t there, there’s just no dignity. 

The other things that differed to Mum’s death was the wake. With Mum we hired a pub out, and we were literally there until one or two in the morning, people were there from all around the world; our family is quite global on both sides. We were sharing stories with my cousins, and my aunts, and my uncles, all of my Mum and Dad’s friends. With Dad, we were told by the funeral directors and crematorium staff we weren’t allowed to spend any time with each other after the funeral; I think it may have even been written on his order of service on the back page.

Obviously, me and my brothers ignored that. After the funeral we went down to a local meadow and sat on a log and drank wine from a thermos flask. That was it; that was his wake.  And then we walked off and that was it, we just said “bye then”. I didn’t touch anyone on  the day of Dad’s funeral. I didn’t get one hug or give one hug, Everything felt so distant, to the point now, it almost feels like it hasn’t happened. 

I feel like I am going to be stuck in the anger stage of grief for a very long time. Although we expected him to die this year, I just feel so angry and bitter, and that is probably my biggest feeling now, rather than thankful that his suffering is over, thankful for his life and thankful for what he did for me. We don’t know when we are going to be able to celebrate his life. We will have a memorial at some point, but until that happens I have to remind myself that he is actually dead, because I don’t feel like I have actually said goodbye. I am stuck with the anger, not able to move on.

Whenever I watch the news or catch one of the government updates it is hard knowing this is still going on. Clapping for the NHS? It makes me angry.  I work in the NHS, it’s all just a distraction. And you know, the government says they have heartfelt sympathy for every single one of these deaths? No, no they do not. And they aren’t doing anything, they aren’t helping these carers, they aren’t helping staff in hospitals, they aren’t helping families, it is all just lies,lies,lies.

And to know that if there had been better preparations put in place earlier, rather than focusing on things like Brexit, I feel like I could have perhaps held my own Dad’s hand when he died, and that is something I will never get back.

Politics was already personal anyway working for the NHS, but now it is super personal. I was cynical about the government before, and now I have actually gone through this with a family member, for everything to feel so undignified. My Dad was an important part of my life, an important man. We haven’t been able to honour that. 

I am working from home at the moment, so I can’t even talk to people about it, it’s those little conversations you have with people that help you overcome things. Those moments aren’t there, you can’t offload on friends and family members… it’s not natural. It’s that simple touch on the shoulder, or that look, that helps you grieve. 

The difference between Mum and Dad’s death has been quite profound. It’s not normal and it’s being normalised. People need to know it’s not normal because covid-19 is not going away and the economy is going to have to trump health at some point, so this is going to affect more people. The human stories aren’t there behind the figures, and they need to be heard.

Do you have a story that needs to be heard? Get in touch

Published by Kerry

Champion of neurodiversity. Carer. Music obsessive. Freelance writer. Music and Arts editor.

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