Kathy’s family wanted to spend quality time with her as she died, but suddenly and unexpectedly became her carers instead. Her sister Terri believes that an overstretched and disjointed system left them wholly unprepared for what was to come.
Please note: this story contains content which could be triggering for some people.
“Of course it’s not that we didn’t want to care for her, but her medical needs should have been met by the professionals.”
"Her name was Katherine, but she was called Kathy by everybody who knew her. She was a very independent lady - a very young 71 and very active. She did a lot of knitting and she could make jewellery, she used to make it for all the young children in the family. She had a little dog and a cat that she lived for, really. They were her companions."
"It was about March when it started. She had an ache in her back, and she started getting a lot of discomfort. And then I noticed she started to ring me and ask me to take her dog for a walk. That got me worried because that [walking the dog] was something she did all the time.
"I remember one day I visited and she was lying on the sofa in a very awkward position. She couldn’t get comfortable.
"And she couldn't cook. She asked me if I would go to the local chip shop for her because she just couldn't get up. She couldn't eat very well either at the time. And that's when alarm bells started to ring."
"She went to her GP, who referred her for a scan, but before that could happen she phoned her daughter up to tell her that she couldn't walk properly. She was losing her balance and falling into the wall, so she rang the GP straight away. From there it went downhill because she rapidly became very, very ill."
"It turned out it was cancer. They said they would have to do major surgery on her back, otherwise she'd never walk again. She was very frightened - she thought she wouldn't come round from that.
"The doctor said the rehabilitation would start and they hoped to get her walking again but after about four or five days he told her she would be unable to walk again. The cancer had spread… it would be more about quality of life than quantity.
"We put things in place like wheelchairs, we got rid of furniture in the house (she lived in a bungalow). We arranged for a ramp to be fitted – although that never happened.
"And then literally within about three days they told us that she only had two weeks left.
“We became my sister’s carers…what should have been quality time for us, as family, to spend with her, was taken away.”
"All the family took turns staying because we had to be up all night with Kathy. Really, we wanted to spend quality time with her. But we couldn't, because we became the carers.
"We had to keep doing rotas around people that could help her better than others, and made sure there was somebody there on tap.
"All the medication for the end of life was in the bedroom and the GP had explained all of this to both myself and to my niece. My niece is a mental health nurse, but if she didn't have that understanding, we would have been absolutely stuck beyond words. Part of the medication wasn't in place, and she came home with no care plan."
"We did get one batch of carers who helped change her. But unfortunately, after they had left one day, my sister needed changing again in the bed. She was bedbound. She couldn’t go to the toilet and was using pads.
"We're not experienced in lifting and I can clearly remember we had no choice but to try and lift her. She weighed about 7 stone and was wet through, but because me and my niece weren't able to lift her carefully, we hurt her. She cried out in pain. We had to get my husband and my niece’s husband to come in and help her, which wasn't dignified for her. Obviously that's uncomfortable. She had no choice. And we went through the whole 12 days like that.
"There were different care companies and they didn't communicate with one another. So we were constantly ringing up asking for more support. And we just didn't get it."
‘One of the worst nights’
"The night before she passed away was one of the worst nights.
"We only got a palliative care nurse the night before Kathy died. She was absolutely fantastic. She explained what would happen at the end of life. There were two lots of medication to be given together.
"I rang the community nurses for help in the early hours of the morning, as we knew Kathy was not feeling comfortable. But we didn’t know that this would be end, and we weren’t aware that they would be the end of life drugs. It took them a really long time to arrive, and when they did, we struggled to convince them to give Kathy the right care."
Kathy died later in the evening of that day.
During the last few hours of Kathy’s life, Terri says that the community nurses failed to administer the correct end of life drugs in a timely, compassionate way, and that she and her daughter - Kathy’s niece - watched Kathy needlessly suffer.
"It upsets us that the support wasn’t there for us, and in the last few hours of her life they didn't make it comfortable for Kathy.
"My daughter told me that my sister said, ‘why won't they help me?’ And that will stay with us for the rest of our lives.
"The only saving grace is that she's now at peace."
‘Grappling at straws’
"I was grappling at straws to get help and it has left us all quite shocked at the way things worked out. I think in an ideal world you think the carers will look after her, but we spent more time taking care of her than we could sit and talk to her. And that's definitely having an effect on the family.
“We had no choice but to become carers.”
Having difficult conversations
"Had the care been there we would have been able to have difficult conversations. We wish we'd asked her what she wanted to do with her money. But as the days went on and things got progressively worse, we couldn't have that conversation anymore because we were frightened of upsetting her.
"All of us think we should have had that difficult conversation and asked her what she wanted.
“I just think things could have been easier. I really thought the care would have been there and I was quite shocked that it wasn't.”
"We wish there would have been one care company who could communicate with one another so they're not overlapping. And many of the health professionals we saw were rushed and cold. But when you've got a loved one dying you're focused on them. To be told each time you ring that you need help and they [the GP/community nurses] are busy and they'll come when they can, was very off-putting.
"In an ideal world it would have been nice to pick up the phone, know somebody would come, and would respond to us in a decent manner. And also just having a care package that would work for my sister."
Why Terri wants to share her story
"I read a story on Dying Matters and it just totally related to what we'd gone through. I showed it to my niece and she said, ‘oh my God, that could have been us…that sounds like that was us’.
"So it wasn't just [us] who were suffering. There are other people out there that are suffering too. It's so important [to share our story] because it could happen to other people."
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Real stories and personal experiences can break down barriers and help people feel less alone. Will you share yours?
Hospice UK offers support and guidance for people who have caring responsibilities.
Talking about death, dying and bereavement can be hard. Our campaign Dying Matters encourages positive change by breaking the stigma, challenging preconceptions and normalising public openness around dying.
By coming together we can also call for political and system change so that people like Terri and Kathy have the right support in place when they need it most – because everyone deserves to die in a good place.