My name is Louise and I’ve worked at Hospiscare for 20 years in the fundraising department. It’s my job to inspire people to donate to this charity, sharing all the heartwarming stories of how our care has made such a difference to people’s lives. Through my work I felt I understood the impact of our care. However, it was not until I experienced it first hand with my own mum, Ann, that I truly understood the value of everything we do for patients and their families. Hospiscare gave our family the greatest gift – one last Christmas with Mum and now it’s our turn to give back.
Louise’s Mum, Ann, with her grand-daughter, Tilly
My mum was a real character – she loved her family, adored her grandchildren and had a wicked sense of humour. She suffered a lot with a weak chest and arthritis so was used to living with quite a lot of pain and discomfort. When she started complaining about pain in her right shoulder, it was dismissed by her and the doctors as arthritis or anxiety. When she was diagnosed with bowel cancer that had spread to her liver in August 2023, we realised this had been one of the first symptoms.
At the time of her diagnosis, Mum was fairly well, but tired. We saw an oncology consultant who gave her the news that though her cancer was stage 4, she was a suitable candidate for immunotherapy: a ray of light in the darkness that we were facing.
Three weeks later, she started her treatment and we hoped for the best. The following days she was tired, the pain in her shoulder was bad and she was starting to struggle with constipation. The colorectal nurses were very kind and gave advice over the phone, but they couldn’t come out and visit, so we muddled through as a family.
By now, my brother and I were taking it turns to stay with my parents as it took two of us to help Mum with her basic daily needs. I talked to our nursing team at Hospiscare as I was worried that Mum was rapidly approaching the end of her life. “Push for a referral,” they said, “so we can see her and help you all.”
A few days later we had a call from the consultant. It was the news we feared. Mum’s blood tests showed that the cancer was not responding to the immunotherapy and they recommended that Hospiscare be brought in at this stage to help us. I didn’t need to ask for the referral.
The same day we were referred to Hospiscare, Dad received a phone call from one of the hospice nursing team who talked through Mum’s symptoms. By 9pm the following evening, a hospital bed and commode had been delivered so that Mum could remain downstairs and carers had been booked to deliver Mum’s personal care. Within 48hrs, Sarah, one of Hospiscare’s specialist end-of-life nurses, came to visit. She spent over an hour in our home, speaking to Mum, speaking to us, examining Mum, enquiring about what was important to us, what did Mum want to achieve. She was clinically dealing with Mum’s symptoms but also sussing us out as a family and what we might need beyond just the medical care.
It is my job to find the right words, but I can’t quite describe the level of fear when someone you love is ill and deteriorating in front of your eyes. Sarah altered Mum’s current drug regime and prescribed different medication. Within 24hrs Mum, was awake again, sitting up, chatting and eating meals with us. The change was dramatic– Hospiscare had given us our Mum back when we felt we were rapidly losing her. Hospiscare’s complementary therapist had shown me how I could massage Mum’s abdomen to help with symptoms, and this too, brought her some relief. The nurses were also a huge support to Dad in making him aware of Attendance Allowance and helping him to complete the very large application form.
Baby Leo wearing the jumper knitted for him by his Great Grandma, Ann
One of the things Mum was keen to do was to finish a jumper for the latest addition to our family, baby Leo. She was a fantastic knitter; we have all been raised in Mum’s home knits, so for us it was comforting to hear the light clatter of Mum’s needles at work again.
For a couple of weeks we adapted to living our life with Mum in her sitting room. We chatted, we binge-watched tv series, shared meals and people came to visit. Then things started to change again. Mum started to sleep more and the pain increased. Sitting in our home, Sarah gently broke the news that it was likely Mum was entering the last phase of life. She answered all our questions honestly and gently and prepared us for the changes that would be ahead and what we might need to support each other. She arranged for Lucyann, Hospiscare’s Spiritual and Supportive Care Lead, to come over and chat to my brother and my dad. To help manage Mum’s pain, Sarah organised for a syringe driver to be fitted by the district nurse.
By now it was just 10 days until Christmas. Mum adored giving presents on Christmas Day, she had already bought them all for her grandchildren and had wrapped them up and hidden them upstairs. It was really important to my Dad that we were all together for one last Christmas with Mum, but I doubted that Mum would last that long.
Christmas has always been important to Ann and Louise
A few days before Christmas, Mum was sleeping all the time and I started to panic. Our kids are all young, excited about the magic of Christmas, what if she died on Christmas day? I spoke to one of Hospiscare’s nurses and poured out my worries to her. She gently reassured me that what we had planned was the right thing to do and that if Mum did die on Christmas Day, we would be ok; the lesson to the children would be that death is not something to be scared of, and not something to be hidden from young people. If it was to happen, Mum would die peacefully, surrounded by everyone who loved her on one of her favourite days of the year and that would be the best Christmas gift we could give her. The power of that skilful conversation in giving us the confidence to stick to our plans was overwhelming.
We had Christmas Day all together, Mum in the room, asleep but with a raising of an eyebrow she was with us, taking it all in, lightly pursing her lips to give us kisses. Though Mum loved Christmas Day, once it was over, she was done. It was a family joke that she was always itching
to take the tree down after Boxing Day. It felt it was on her terms that Mum took her last breath on Boxing Day evening as I kissed her goodnight.
Again, I find myself lost for the right words to say how important Sarah and all the Hospiscare team were in enabling Mum to have a good death. There is no sweeping in to save the day, there is no shiny ambulance. What there is, is a tonne of expertise, wisdom and authority around every aspect of end-of-life and they give that directly to the patient and the family. At a time when you feel you are quickly losing someone you love, and you have lost control of your life, their reassurance brings a sense of calm amongst the panic and the chaos. Behind
the scenes they are co-ordinating with all the parts of the NHS – liaising with GPs to change medication, prescribing drugs to district nurses for syringe drivers, arranging more carers to come in, answering questions in the middle of the night. They cannot change the path of your
loved one but what they can do is prepare you for what lies ahead which gives you the strength to meet each day and enjoy the time you have left together.
If we were not referred to Hospiscare when we were, the final weeks of Mum’s life would have been very different. She would have been an emergency admission to hospital and most likely died there, somewhere she did not want to be, somewhere we would not have been able to
have Christmas altogether. While my Dad, brother and I adjust to the gaping hole that she has left, we take comfort in knowing that her final weeks were how she wanted, that we were able to give her a good death at home and we could not have done that without the expertise of
Hospiscare working silently but endlessly behind the scenes.
We absolutely cannot lose this service, so please, if you feel able to give a donation so that other families can benefit from the care of these fabulous nurses this Christmas, please do so.
