"I was with her right to the end, which in some ways made it easier."
Barbara Deane loved seeing her family together at Christmas and when she began to deteriorate from heart failure last year, her family made sure they created extra special memories together. Barbara died peacefully in February 2019 at home with her loved ones where she wanted to be.
Her daughter Belinda Jackson remembers the support they received from St Helena, and the happy times the family spent together last Christmas:
“At this time of the year, my mum would be getting her Christmas presents ready. I found a list of what she’d planned last year. We’d done some online shopping together and we got matching slippers.
“Mum always used to say ‘you’ve put more than four sprouts on my plate!’ But if you brought two cream cakes home, she’d eat both of them!
“We knew it was very likely to be mum’s last Christmas. In the morning we all went into mum’s room and undid the presents and sat with her. She couldn’t get out of bed for long without oxygen but she did come in for dinner. She managed about 20 minutes. We all dressed up and mum was Mary. She desperately wanted to join in with the fun and I think Christmas kept her going.
“On Christmas Day in the evening I did a buffet and I asked her what she fancied. I took it in to her room and we sat there together, and it’s those moments you have to cherish. She was always there for me and it was such a special bond.
“On new year’s eve my husband and I sat in there with mum and had the fireworks on the tv and a few drinks. It’s those moments.”
Barbara chose to remain at home throughout her illness and as the heart failure progressed, one of St Helena’s community clinical nurse specialists, Ross Chirgwin, became a firm favourite visitor. Belinda explained:
“When Ross used to come round, it was lovely because she’d always want to smarten up. I knew when towards the end, I said ‘Ross is coming’ and I didn’t get anything from her at all. I knew it wasn’t good because she’d always say ‘brush my hair’ before his visits.
“She had such a soft spot for him. He was fantastic with her because he answered the questions people are probably too frightened to ask. She’d already planned her funeral ages ago, what she’d like, what she wanted, we even picked her outfit; we had a bit of a laugh about that, she’d worn a beautiful outfit to my daughter’s wedding a few years ago and she said ‘yes, I’ll wear that suit but don’t be putting on those silver ballet pumps because I only wore them once; it would be an absolute waste. Put my bed socks on because you know I like my feet warm!’ We did laugh!”
The family was open with their discussions and Barbara’s choices for her care were recorded on the My Care Choices Register. When she asked about the dying process, they asked CNS Ross, who explained sensitively and honestly. Belinda recalls:
“After it was explained, it was like mum had accepted that. I don’t think she gave up the fight but I think she was more at peace with it. She used to say to me ‘Ross is so lovely, he’s got such a lovely way of explaining things’ and I asked her if she felt better and felt she understood a bit better. And she said ‘it makes sense now, I understand that’. I think it made her feel a bit more at ease. I think she knew there was no going back this time unfortunately, because she had come back so many times before. I think it made her feel ‘if this is my time, then this is my time’.
“To have somebody coming in to answer your questions… I would say ‘this may sound a bit silly Ross, and he would say ‘it’s not a silly question’. I didn’t know what to expect and what was important. I felt like there was this trust.”
I didn’t know what to expect and what was important. I felt like there was this trust.
Having been in and out of hospital over the years, it was important to Barbara to stay at home but not be on her own. She moved in with Belinda and her husband and the couple cared for her between them as well as both working full time.
“We were all so close, that’s why I’m glad we got to keep her here,” said Belinda. “We wanted to make sure she had a quality life and we tried to make it fun. If she wasn’t at home, I don’t think she would have been around as long as she was.”
Barbara had been a big charity supporter throughout her life and had enjoyed volunteering to sell raffle tickets or take donations on the door at church fetes.
“We knew her values,” said Belinda. “I would do it all again in a heartbeat. We wanted her to be safe and independent. She had such a fight about her, I never met anyone like her.
“I wish everybody knew about SinglePoint and the My Care Choices register. Just knowing SinglePoint was there over Christmas was reassuring when everything else was closed. It wouldn’t have been possible without their support. I’d ring and say I’m so sorry for ringing but I just wanted to… and they would always reassure me.
“I was with her right to the end, which in some ways made it easier. I used to say I love her with all my heart always, and that’s what I’d say to her every night, and that’s what I said to her as she passed away.
“If it hadn’t been for St Helena Hospice and all the services it provides, we as a family wouldn’t have been able to make that happen.
“She’s certainly left a gap; everybody loved her and she had time for everybody. Her memory will always be with us. I’d love to have my mum able to be here with us this Christmas but I hope we did her proud. I’d like to think that she was happy.”
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