I wanted only the best for Mum: What I’ve learned being a carer
When her mum was diagnosed with terminal cancer, Shital Bhaloo looked after her at home. In spite of the challenges she faced, particularly with pain relief, caring for her mum was a life-changing experience Shital will always remember.
When Shital’s mum, Harshida, was diagnosed with acute myeloid leukaemia, she was given just six weeks to live.
“Mum had taken care of us all of her life,” says Shital, who took time off work to care for her. “She was always putting the family first before herself. So it was a real privilege for me to focus entirely on looking after her needs instead.
“Thinking back, we were very lucky to have the opportunity to spend that quality time together.”
Worries about pain
Shital recalls how her mum – a strong-minded, gracious, spiritual and generous person – wasn’t afraid of dying but was very worried about being in pain.
“Mum wanted to be cared for at home, to be in her own space and with the people she loved. She wanted to remain independent and be involved in her own care for as long as possible, and live her final weeks on her own terms.”
Harshida’s GP helped the family to plan ahead by explaining what to expect so everyone could be prepared for the end stages of her life, as her condition deteriorated.
Lack of pain relief
But nothing prepared Shital and her family for the final days of Harshida’s life when she was in a lot of discomfort.
Shital says: “During her last days, Mum was suffering from extreme breakthrough pain. It was distressing for us to see her in that kind of pain and not know what to do to help her and make that pain stop.
“We felt a constant level of fear, helplessness and anxiety as we had no idea who to call for urgent assistance. And as it was also a bank holiday weekend, it was almost impossible to have somebody over promptly to help.”
That weekend, Shital and her family were completely reliant on the district nurses and on-call GPs for support.
“It became very obvious to us that some of them were not experienced enough in palliative care, symptom control and pain management.
“There were times when Mum wasn’t given effective doses of morphine to control her pain and we became so desperate to have the right pain relief for Mum.”
Expert care makes a big difference
As Shital and her family struggled to keep Harshida free from pain in her final days of life, they found expert advice and support from Marie Curie Nurses.
“Marie Curie Nurses knew exactly what to do. They had the right training and expertise which I felt was invaluable, especially when it came to managing pain and keeping mum comfortable and calm.
“One of the nurses made sure we had the correct medicine for pain relief at home, ready for use whenever it was needed. She knew what to anticipate, made sure we were getting the right equipment, such as a syringe driver, and explained what was going to happen next so that we were prepared and informed. It made a huge difference.”
Strength and bravery
Despite the challenges of keeping her mum comfortable, Shital is grateful of her time caring for her mum.
“I have so many fond memories of our time together, our poignant conversations about life and the amazing tales she told us about her childhood that we never knew.
“It’s true that adversity kindles the human spirit. We had time with our mum at her most strongest and bravest. She was, and is, always an inspiration to us.”
Shital’s top tips for caring for a family member:
- Ask for help as and when you need it. If you’re unsure of what you’re doing, ask your GP or nurse. If you need emotional or practical support, reach out to your family and friends.
- Keep things normal, as much as possible. With Mum, we made sure she always had her favourite music CDs within reach, art and crafts to get creative with, and other activities she can enjoy and be herself as much as possible.
- Know your stuff and be prepared. Find out as much as you can about the physical and practical side of caring, such as medical and dietary needs, the right bedding, personal care items and know-how.
- Use all resources and advice available: from your GP, nurses and information you can find online – such as the self-help videos on Marie Curie’s website. And ask other carers for their guidance on how they cope.
At Marie Curie, we recognise the challenges carers like Shital face. We’ve funded researchers to develop a nurse-led intervention that could help improve the knowledge, skills and confidence of carers in managing pain medications at home for their loved ones living with cancer.
Looking for support?
If you or someone you know has been affected by a terminal illness, you can contact the Marie Curie Support Line on 0800 090 2309 for free, confidential support and practical information.