Ask anyone if they’re afraid of death and many will respond “no” – it’s the actual act of dying that terrifies them. That’s why providing end-of-life care for someone you love is the ultimate act of kindness, and one that Lorna has taken on not once, but twice.
Fascinated by the process of death, Lorna’s foray into palliative care began 16 years ago when her elderly father came to live with her family. Her story is a testament to having the important conversations around your ‘end of life’ arrangements, because making your own choices can make a world of difference to family and friends.
“My father wasn’t ill, but he was winding down his life and willing himself to die. I’m not a nurse but I did have a real closeness with Dad, as did my husband, who was by then retired. If fact, my dad looked upon my husband as his son so when we were discussing him coming to live with us, my husband didn’t hesitate and was willing to lend a hand when needed.
“I was lucky enough to have the support of a lovely young doctor who, 16 years ago, was progressive in his thoughts about palliative care. He was also very pragmatic and asked me outright whether I understood that my dad was coming to my home to die. “Yes”, was my simple answer. He gave me a lot of support and would come in and see Dad every day. It was comforting to have someone oversee the medical process of my dad’s death and assure us that everything was as it should be. He also told me that he was honoured to be a part of Dad’s death.
“As the process moved on, I had to ask for assistance and equipment from the district nursing service. I couldn’t administer certain medicines and there is obviously special equipment, such as a hydraulic bed, that you really need.
“It was surprisingly easy for me to give end-of-life care, because I’m not frightened of death and it became apparent that neither was my father. I asked him one day if he knew what was happening to him and he said, “Yes, I do. I’m dying.” That made it really easy to for us to talk about what was happening and for me to explain why things were being done. He did have a fear of the actual process of death; it’s fear of the unknown. He would often ask to have the light left on; he didn’t want to be in the dark and it was important to him to just have someone there. That time I got to spend with my dad was really special, and even in his last days, he taught me so much.
“After my dad passed away, I was invited to become a palliative-care volunteer. Once I had finished grieving for my dad, I decided that this was something I could do to help others provide the much-needed care for their loved ones and give them a real say in the type of death they wanted.
“The one thing I quickly realised when I was interacting with people as a volunteer is that the carer and the person being cared for would keep from each other that they knew exactly what was going on. They would confide in me when I would speak to them individually – it’s always easier to talk to a stranger, isn’t it? I soon saw it as my role to try and get families to talk to each other about what was going on, and how they felt.
“Some 10 years after my dad’s death, my husband was diagnosed with lung and brain cancer. Having been through it with Dad, he knew I could cope with caring for him at home and asked whether I would keep him at home. There was no other answer than “Yes, I will.”
“Caring for someone is a very physical job, and towards the end, 24-hour care is usually needed. I’m lucky to have three adult children who were all willing to help.
“The majority of palliative care is still undertaken in a hospital or hospice setting, because it’s frightening for a lot of people to even consider taking it on. But it gave me the chance to say goodbye to people I love, in my own home. I could get into bed with my husband, as I had done with my dad, and just hold him. That’s something that you can’t really do when the person is in a hospital.”
Caring for someone at home isn’t something that every one can take on, but if you’ve been inspired by Lorna’s story and think it’s something that you could do for a loved one, don’t be afraid to speak to their healthcare professionals and the local palliative-care team. There is often plenty of help available and you may even be able to have access to a palliative-care volunteer, such as Lorna.
“Lorna’s story shows us that death and dying don’t have to be clinical processes, to which family members are just passengers. Like making your own plans in advance for a funeral, having a conversation about what will happen at the end of a loved one’s life can be very empowering and can transform your uncertainty into courage, as well as prepare you for your grief,” says Simone Ravenscroft, Regional Manager White Lady Funerals.