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| ‘Mum was dying at home and I did my best, but I was offered little help’ | |
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| As pandemic leaves families struggling with terminally-ill relatives, charity calls for boost to community services | As pandemic leaves families struggling with terminally-ill relatives, charity calls for boost to community services |
| There is a room in her home that Gwyneth finds it hard to go into. It is the room where her mother, Celia, died of pancreatic cancer on 6 April, a fortnight after lockdown began. “We had discussed her going into a hospice,” said Gwyneth, 28. “But when she became ill enough that she needed a hospice, it was just before lockdown started, and we had a lot of fear over whether we would be able to be with her and whether we would be putting ourselves at risk of catching Covid-19 when we went there.” | There is a room in her home that Gwyneth finds it hard to go into. It is the room where her mother, Celia, died of pancreatic cancer on 6 April, a fortnight after lockdown began. “We had discussed her going into a hospice,” said Gwyneth, 28. “But when she became ill enough that she needed a hospice, it was just before lockdown started, and we had a lot of fear over whether we would be able to be with her and whether we would be putting ourselves at risk of catching Covid-19 when we went there.” |
| During the coronavirus crisis, more people, such as Celia, are choosing to die at home. According to the latest figures from the Office for National Statistics, about 42,000 people died at home in England and Wales between 6 March and 26 June and nearly half of those deaths (19,700) were classed as “excess deaths”: extra deaths that have occurred at home, compared to the five-year average. Yet only 2,318 of these deaths involved Covid-19, the figures indicate. | During the coronavirus crisis, more people, such as Celia, are choosing to die at home. According to the latest figures from the Office for National Statistics, about 42,000 people died at home in England and Wales between 6 March and 26 June and nearly half of those deaths (19,700) were classed as “excess deaths”: extra deaths that have occurred at home, compared to the five-year average. Yet only 2,318 of these deaths involved Covid-19, the figures indicate. |
| Now, the terminal-illness charity Marie Curie is calling on the government to increase funding for NHS and social care services for people dying at home. | Now, the terminal-illness charity Marie Curie is calling on the government to increase funding for NHS and social care services for people dying at home. |
| Celia, 59, had what Gwyneth describes as “a good death”: peaceful at the end, after two days in an “awful lot of pain”, with her husband and daughters at her side. | Celia, 59, had what Gwyneth describes as “a good death”: peaceful at the end, after two days in an “awful lot of pain”, with her husband and daughters at her side. |
| The care provided throughout her illness at home by NHS district nurses and a Macmillan cancer support nurse was both “wonderful” and “essential. “They treated her not only with respect but with love. I can only describe them as angels. We wouldn’t have survived without them.” | The care provided throughout her illness at home by NHS district nurses and a Macmillan cancer support nurse was both “wonderful” and “essential. “They treated her not only with respect but with love. I can only describe them as angels. We wouldn’t have survived without them.” |
| Others are not receiving enough end-of-life care. Simon Jones, from Marie Curie, said: “We know many community-based services have been significantly reduced through the pandemic, and we are concerned this could mean that people dying at home haven’t had the care and support they needed. It is even clearer now than it was before the pandemic that the government needs to invest more in community-based services.” | Others are not receiving enough end-of-life care. Simon Jones, from Marie Curie, said: “We know many community-based services have been significantly reduced through the pandemic, and we are concerned this could mean that people dying at home haven’t had the care and support they needed. It is even clearer now than it was before the pandemic that the government needs to invest more in community-based services.” |
| Richard Webber, a paramedic and spokesperson for the College of Paramedics, said: “I’ve certainly attended more end-of-life care patients recently, who in the past may well have had more support at home than they have now.” | Richard Webber, a paramedic and spokesperson for the College of Paramedics, said: “I’ve certainly attended more end-of-life care patients recently, who in the past may well have had more support at home than they have now.” |
| He wants the government to address this. “There’s a likelihood of a second wave [of Covid-19]. There needs to be a consideration by the government of what support can be provided in the community, because a lot of those services have not been there during lockdown in the same way as they were previously.” | He wants the government to address this. “There’s a likelihood of a second wave [of Covid-19]. There needs to be a consideration by the government of what support can be provided in the community, because a lot of those services have not been there during lockdown in the same way as they were previously.” |
| Celia, for example, needed someone to sit with her all night, as well as help going to the toilet and moving around. Gwyneth and her family often needed to provide this care, instead of being able to rely on a professional carer or anyone else to help. “What I found difficult was that I personally had no care experience,” says Gwyneth. “I wanted to do what was best for her – and I did not always know what the best was. It’s a physically demanding role.” She pauses. “That was difficult.” | Celia, for example, needed someone to sit with her all night, as well as help going to the toilet and moving around. Gwyneth and her family often needed to provide this care, instead of being able to rely on a professional carer or anyone else to help. “What I found difficult was that I personally had no care experience,” says Gwyneth. “I wanted to do what was best for her – and I did not always know what the best was. It’s a physically demanding role.” She pauses. “That was difficult.” |
| The experience of seeing someone you love go through a difficult death – particularly at home, where distressing memories may be impossible to escape from – is an emotional legacy that stays with you, potentially for the rest of your life, Jones said. | The experience of seeing someone you love go through a difficult death – particularly at home, where distressing memories may be impossible to escape from – is an emotional legacy that stays with you, potentially for the rest of your life, Jones said. |
| “It has a huge impact on people’s emotional wellbeing and mental health. We should never lose sight of the fact that the support someone gets at the end of their life is potentially as important for the person who’s left behind as it is for the person who’s dying.” | “It has a huge impact on people’s emotional wellbeing and mental health. We should never lose sight of the fact that the support someone gets at the end of their life is potentially as important for the person who’s left behind as it is for the person who’s dying.” |
| The grieving process in lockdown has been hard for Gwyneth. Like everyone else, she has had to spend more time in her home than usual. “I now work from home, and at the beginning of lockdown I was working in the same place where I had suffered quite a traumatic experience. And that … that has been a worry for me.” | The grieving process in lockdown has been hard for Gwyneth. Like everyone else, she has had to spend more time in her home than usual. “I now work from home, and at the beginning of lockdown I was working in the same place where I had suffered quite a traumatic experience. And that … that has been a worry for me.” |
| Memories of the difficult things she and her father had to do for her mother while she was dying can be triggered in certain rooms. And while she takes comfort in knowing her mother died peacefully at home, and that they provided the best care they could for her, there has been no easy way to ease the tension. | Memories of the difficult things she and her father had to do for her mother while she was dying can be triggered in certain rooms. And while she takes comfort in knowing her mother died peacefully at home, and that they provided the best care they could for her, there has been no easy way to ease the tension. |
| “All of my usual coping mechanisms were gone – I couldn’t go and sweat it out in the gym or drink with my friends and have a distraction. That has almost prolonged the grieving process.” Isolating in her home combined with the enforced separation from friends and family has taken its toll: “I’ve been very lonely.” | “All of my usual coping mechanisms were gone – I couldn’t go and sweat it out in the gym or drink with my friends and have a distraction. That has almost prolonged the grieving process.” Isolating in her home combined with the enforced separation from friends and family has taken its toll: “I’ve been very lonely.” |
| Right now, Gwyneth is feeling scared about life after lockdown. “A lot of people will get to go back to normality but for people who have suffered a bereavement during this time, their normality looks entirely different. | Right now, Gwyneth is feeling scared about life after lockdown. “A lot of people will get to go back to normality but for people who have suffered a bereavement during this time, their normality looks entirely different. |
| “I have a lot of fear about how that’s going to affect not just me but all those other people. I’m anticipating a second wave of grief and sadness. Because I can finally go out to a restaurant and have a meal – but who would I most like to go out and celebrate with? My mum,” she says. “And she’s not around.” | “I have a lot of fear about how that’s going to affect not just me but all those other people. I’m anticipating a second wave of grief and sadness. Because I can finally go out to a restaurant and have a meal – but who would I most like to go out and celebrate with? My mum,” she says. “And she’s not around.” |