This time last year, Bob and Jan Shaw were celebrating Bob’s recent retirement, looking forward to the year ahead, and relishing the time they now had to spend together with family and friends. They could have never have foreseen that just a few months later, Jan would be diagnosed with a rare form of cancer, and that she would not be with them by Christmas.
Jan’s daughter Carla describes 2013 as a year with the highest of highs, and the lowest of lows. “Dad retired in January, and he and Mum had so many plans for the coming years. They headed off on a holiday around the South Island, re-tracing a trip they’d done together before they had children, and they had a ball. Then our family came together for my wedding in April. It means so much to me now that Mum and Dad were able to enjoy those special times before we knew anything was wrong”.
Jan’s incurable cancer diagnosis, linked to exposure to asbestos 30 years ago, came as a huge shock to Jan and her family. “When Mum received the news of her illness she withdrew into herself” Carla says. “Soon she was spending most of her time in bed, and it was a constant struggle for her to get comfortable. She didn’t sleep much, and was becoming so anxious that she didn’t want to be left alone. It wasn’t long before Mum needed someone by her side 24/7”.
Bob and Carla knew it would tough, but say caring for Jan in their family home was non-negotiable. “Mum loved being at home. Before she became sick, Mum would host family barbecues for her children and grandchildren. She’d potter in the garden, cook chutneys and jams, watch sport and read. Home was where Mum felt most comfortable, and where she wanted to be, so Dad and I were determined to give it our best shot”.
Carla describes the months of looking after her mother as a privilege. A few years earlier, Carla herself had spent 3 months in hospital with a chronic illness, and she remembers the unconditional support that her Mum gave her over that time. “Mum was amazing, I don’t know how I would have coped without her. She dedicated her life to looking after our family, and this was our chance to look after her when she needed us most.”
When it became clear that Jan needed full-time care, Carla resigned from her job to help her Dad. As Jan’s condition deteriorated, Bob and Carla were incredibly relieved to find Hospice North Shore was there to help.
“Mum found the thought of leaving the house so traumatic that she’d become overwhelmed. She was incredibly anxious on the few occasions she needed to go to the hospital for tests. We were so grateful for the Hospice Community Nurses. They visited Mum at home so that she didn’t need to leave the house, and came as often as we needed them.
“Lyn and Maria, two of the wonderful Nurses, would visit during the week, talking with Mum about how she was feeling, and making adjustments to her medication and pain relief. They were a great sounding board, providing Dad and I with advice and ideas for how we could help to keep Mum comfortable, which was a big issue for us. Having the same nurses was reassuring for us all – they knew Mum and her individual needs. They were also able to see subtle differences between each visit that Dad and I couldn’t.”
As time progressed, Jan’s medication became more complicated. Lyn and Maria would talk Bob and Carla through how and when to administer the medication and pain relief, and the possible side effects of each drug. “It gave us confidence to be able to care for Mum, and knowing we weren’t on our own was so reassuring. The wonderful staff at Hospice were with us when we needed them.”
Eventually, the emotional, mental and physical stress of caring for Jan became too much, even for Bob and Carla. “Lyn and Maria saw what was happening and we discussed moving Mum into the In-patient Unit for a week or so, so that Dad and I could rest. Obviously our first concern was Mum’s anxiety – but Lyn spent time talking it over with Mum, and helping us ensure that the transition was as stress-free as possible.
“Mum was in the Hospice in-patient unit for 13 days and died peacefully, surrounded by her family, in a room where she felt safe and comfortable. The nurses and doctors showed so much care and compassion. Dad and I were able to go home at night with peace of mind. Hospice gave us the chance to spend time with Mum as a family, rather than as her carers. It was so special for us all.
“Dad and I always say that the team from Hospice North Shore has been our life-line,” Carla says. “I just don’t from know how we would have coped without them.”
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