Maureen Anderson can remember capturing one of the final acts of intimacy between her parents who had been married for 59 years.
While caring for both in their living room, she moved their beds together, to let her father hold onto her mother’s hand before he said a prayer.
“We explained to my dad that mum has only got a week to live,” she said.
“He always prayed over us. So it was soothing, but still upsetting knowing that he was saying goodbye to the woman he absolutely loved.”
Although Maureen is grateful she managed to take a picture of that moment, she also feels the support she needed in managing her mother’s end-of-life care was far too inconsistent.
A survey by the charity Hospice UK has suggested that less than half of people who died at home during the pandemic received good professional care, according to their loved ones.
In addition to that, it found that 31% of people who died at home received no professional care in the final two weeks of their life.
In Maureen’s case, this lack of physical and practical support led to her having several questions.
“I personally would have liked to have known all the details of the process of dying,” she said.
“I put essential oils on my mum, I was massaging her with my hands, and anyone that visited could massage her and spend some time.
“I don’t know whether my mum was in pain,” she said.
‘Disappointed, shocked and confused’
Maureen also said that she didn’t find out if her mum would need end-of-life care until she was given the hospital’s discharge letter, despite speaking to the staff regularly. A situation she says left her “disappointed, shocked and confused”.
As part of their Dying Matters Awareness Week, Hospice UK is looking to find justice for people like her by renewing its call for deaths at home during the pandemic to be examined by the COVID-19 Public Inquiry.
They also want palliative care in the UK to become more accessible and of better quality.
“Throughout the pandemic, thousands of people have been forced to rely on loved ones to care for them, while often struggling to get things like adequate pain relief and coping with great stress and uncertainty,” the charity’s head of policy Dominic Carter said.
“While hospices across the UK have successfully started adapting services to address the growing needs of communities, they and the other end-of-life care services need more support.”
More than £400m given to hospices
The government says it is already doing more to support people in end-of-life care, with more than £400m given to hospices since the pandemic started, while a spokesperson for the Department of Health and Social Care also points to recent law changes.
“The Health & Care Act will also improve the provision of this care by making clear that Integrated Care Boards are responsible for commissioning palliative and end of life care services,” they said.
For people like Maureen though, that is just the beginning, she wants to honour her parents and those who also lost their lives at home during the pandemic, by pushing for change, but the ultimate goal of this week is a simple one.
To make people more comfortable with talking about death.
“My father and I spoke about death quite regularly,” she remembered.
“We know that this is part of the cycle of life, and I’d be encouraging everyone to have those conversations.”