Carers Week: Joy’s Story
Providing end of life care to your loved one is never an easy task, but Joy Spittles found herself in the tough position of being sole carer for her ex-husband, Geoff, whom she had left 25 years earlier after their marriage broke down.
Joy was referred to St Catherine’s community team and had a lot of support from Clinical Nurse Specialist Sandy Harrison. Because of the pandemic, the two women never actually met.
To mark Carers Week from 5-11 June, we’re sharing Joy’s story of her experiences being a carer, and how she finally met the voice at the end of the phone who kept her going through the toughest times.
Joy explains: “Geoff was not the easiest of men and, with no family, it landed on me to care for him. It was really important for Geoff to stay at home. I knew he wouldn’t deal with being in hospital as he wasn’t trusting of healthcare professionals, and he just wouldn’t accept responsibility of what was coming in the inevitable end.
“Nursing someone in their home is a very lonely place to be when you don’t have any other back-up. I really started to struggle. It was all down to me – I even set up a camera so that when I wasn’t there, I could still check on him. It was a very stressful role.
“Thankfully the Doctor saw him getting weaker and weaker and referred him to St Catherine’s. The hospice had been in the back of my mind but I had thought it was mainly for cancer patients and Geoff had a chronic lung condition known as chronic obstructive pulmonary disease (COPD).”
“From the very start, St Catherine’s worked like clockwork – even from a distance. Sandy would ring me regularly to see how I was doing. She was my lifesaver. Sometimes you have no choice in life, you’ve got to battle on, but just having Sandy’s voice at the end of the phone was incredible – calm and reassuring – trying to help me solve problems as they arose.”
“So many other St Catherine’s staff were phenomenal too. You could phone day or night, and you knew you would always get a phone call back. It was such a comfort and a reassurance that something would be done to guide you to get the necessary help.
“St Catherine’s also helped Geoff with difficult conversations about his wishes for the end of his life which he refused to talk about with me.
“The district nurses’ support was excellent too, I often had to call them out when he became very anxious at night.
“Sandy’s main concern was that I was alright. I think Sandy worried whether or not I would be able to keep going. It was Sandy who helped me when I found myself at my lowest ebb and something had to change. Geoff wasn’t eating, his breathing was getting worse, and he had terrible pain that I couldn’t control. I was doing everything I could, but it felt like we were fighting a losing battle.
“Sandy was outstanding, she helped me to get Geoff into the hospice for a few days. The consultant came out to visit him and encouraged him to come to the hospice. He was very against coming into the hospice at first, he wouldn’t accept help, but everyone was so good with him. The support from the hospice team, together with the community team was second to none.”
“Geoff ended up staying in the hospice for 13 days. It is such a different environment to a hospital – words can’t really express it. When he was in the hospice, I know he wasn’t easy for the staff – but they were all so good with him and allowed me to have some time for myself, time I didn’t realise I needed.
“In the end, Geoff died at home with carers to help me. I would have been happy for him to have been in the hospice, but it had always been his wish to be at home and he died very peacefully – for the first time in however long. It’s wonderful to have complete closure and know that there was no more that I could have done. Everything was as perfect as it could have been.
“Caring for Geoff was the first time I’d ever been involved with hospice care. The overwhelming warmth, support and empathy of Sandy and everyone there involved in Geoff’s care gave me complete confidence.”
“What makes St Catherine’s exceptional is its exceptional staff and I could not have got through what I got through without them all.
“I would have no hesitation in recommending the hospice and it is certainly somewhere I would like to end my days. Please make sure there’s a space for me – I want to come in when it’s my turn to kick-the-bucket!
“Meeting Sandy is brilliant – it’s something I’ve wanted to do, to say thank you to her and everyone who helped me.”
“The pandemic meant we all had to do much more of our support by telephone rather than face to face and although I never met Joy, I just felt we built up a good rapport over the telephone. St Catherine’s needed to look after Joy while she was caring for Geoff as she was having to manage so much on her own.
“Caring for a husband you have separated from just makes her more of an angel if you ask me! Joy was a great advocate for Geoff and she knew him the best, so we had to listen to her and ensure we got the right support for both of them.”
“I did not help Joy alone – I have a fantastic team of experienced nurses that I am able to talk to with years of experience in palliative care, so I asked for help from the team around me. Most nurses train to make people better, so you have to be a certain type of person to want to be a palliative care nurse.
“Since Geoff passed away, Joy has occasionally emailed and continued to express her gratitude. We knew we wanted to meet each other one day – it is such a lovely and important part of supporting someone to be able to meet them face to face. It’s so great to finally meet her!”
If you’re looking after someone who is unwell or have been caring for someone who has since died, you may find you’d like a little support of your own. Do take a look at the resources and support available to you at St Catherine’s.