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Caring for someone in their final days can be daunting, but it’s something that many of us will do in our lives. However, many people aren’t aware that there are services like Marie Curie available to help.
Marie Curie is the UK’s leading end-of-life charity. They offer care and support to anyone with an illness they’re likely to die from and those close to them. This includes Alzheimer’s (and other forms of dementia), motor neurone disease, Parkinson’s, advanced cancer, and heart, liver, kidney, and lung disease.
Their Nurses and healthcare professionals bring 75 years of experience and leading research to the care they provide at home, in their hospices, and over the phone.
To find out more about what Marie Curie can do for patients and their loved ones, we spoke to Healthcare Assistant Marlene Bayunga. Below, Marlene gives us an insight into her role and shares some heartwarming stories from her time at Marie Curie.
Many people are choosing to include gifts in their Will for Marie Curie to help them provide expert care to people approaching the end of their lives. Find out how you can do so too with Marie Curie’s free Wills guide.
“The most important aspect of end-of-life care is that people aren’t alone in their dying hours”
Sixty-year-old Marlene has worked in healthcare for decades. She started in a residential care home before moving to an agency. Then she finally joined Marie Curie as a Healthcare Assistant back in 2016, working nights to look after people approaching the end of their lives in their homes.
“We walk in and relieve the carers, relatives, or friends of their caring responsibilities,” she says. “They’re often on duty 24/7 and need to go to sleep. Mostly, they’re very pleased to see us because they can have a good night’s rest knowing that someone experienced is looking after their loved ones.”
As a Marie Curie Healthcare Assistant, Marlene’s responsibilities include monitoring the patients’ conditions, recording any changes, and calling for assistance when needed from people like the GP and district nursing teams. However, as she explains, her job is just as much about companionship as providing healthcare services.
Marlene with a patient
She says, “If the patient is awake, we chat with them all night and have a laugh. The most important aspect of end-of-life care is that people aren’t alone in their dying hours. Even if they’re not responding anymore, we touch their hands and let them know there’s somebody with them.
“In their last moments, if there’s a relative in the house, I can usually wake them up so they can say their final goodbyes. That’s a precious moment for them.
“For example, I had one patient whose wife had gone to do her prayers. I was recording every second and the patient’s breathing slowed. When the wife came back, I said, ‘He’s finally going,’ so she called her daughters downstairs and they were able to hug their father before he went.
“Later, the wife found my recording sheets in the district nurse’s folder. It included details of all the care I delivered, right down to the last second. She said to me that she would keep them forever and ever; it was the last memory she had of her husband.”
“I said, ‘You don’t have to be alone. I can sit with you all night’”
As Marlene tells us, the work that Marie Curie Healthcare Assistants do is as much about assisting the loved ones of those approaching the end of their lives as it is about the patients themselves. Whether that’s giving them a well-earned break or offering emotional support.
Recently, Marlene was looking after an elderly patient. Her daughter had travelled from Australia to be with her mother in her final days.
“When the daughter went to sleep,” says Marlene. “I pulled my chair next to the patient’s bed so I could observe her while I was writing my report. After half an hour, I noticed that her eyes, colour, and breathing had changed, so I went straight up to the daughter and told her that her mother was dying.
“The daughter came down, and within five or 10 minutes, her mother died. The daughter said, ‘I knew she would go, but I didn’t think it would happen so soon.’ So she hugged her mother and said, ‘Mum, you can go now. It’s OK for you to go and join Dad.’”
After making the patient comfortable, Marlene called the rapid response team to verify the death, and the daughter said to Marlene, “I’m all alone now, I don’t know what to do.”
“So I said, ‘You don’t have to be alone. I can sit with you all night.’” Marlene explains. “And that’s what I did. We had a chat, she called her family in Australia, her grandchildren, and her cousin in England. When I left at seven o’clock, her cousin was on their way. She was very grateful for all the support that Marie Curie was able to give her and her mother.”
“It’s a simple task, but it makes a whole lot of difference”
Marlene tells us that the most rewarding part of her job is seeing that the family is glad their loved one is in safe hands.
“Just the relief that there’s someone with their relative is enough to make them feel better,” she says. “They can have a break, sleep, or read a book. One night, I went to see a mother being looked after by her two daughters. It was the first time the daughters watched a film the whole way through because they knew I was there. It’s a simple task, but it makes a whole lot of difference.”
Marlene at work
But, Marlene explains that, sadly, communication breakdowns can happen when end-of-life patients are discharged from the hospital. In some cases, loved ones aren’t properly informed about the support that’s available, which can lead them to struggle to provide care by themselves.
We recently spoke to one such person, Sharon, who was left with nowhere to turn after her 95-year-old father was diagnosed with terminal cancer. But Marlene is keen to point out that Marie Curie are here to help – not just to provide care themselves, but also to point relatives to other helpful services.
“Many of the relatives haven’t had any experience with death before. We come in, educate them, and tell them stories. We explain the procedures and support that’s out there. Some relatives say, ‘I didn’t know this even existed.’”
“There’s always somebody to speak to if you’re worried and don’t know what to do”
Speaking about the importance of Marie Curie’s work to help people spend their final days at home, Marlene says, “Sometimes, it can make dying a bit more peaceful. You’re surrounded by your family, friends, pets, and pictures of your loved ones. Patients can open their eyes and see familiar surroundings, which can make them more restful.”
However, not everyone chooses to spend their end-of-life period at home, and one piece of advice Marlene gives to relatives is to respect their loved one’s choices, whatever they may be.
“Some people prefer to be in hospital, while others would rather go to the hospice. So, if the person is still mentally able to decide where they want to go, their choice must be well respected.
“Another piece of advice I give to relatives, friends, or carers is, if they’re concerned, call for help, call Marie Curie. There’s always somebody to speak to if you’re worried and don’t know what to do.”
As a charity, Marie Curie relies on donations to continue providing people with end-of-life care. With this in mind, many people choose to include a gift to them in their Wills. Below, you can find out how to include one in yours with Marie Curie’s free Wills guide.
And to learn more about the impact Marie Curie services can have, why not read Sharon and Raymond’s story, here?