Until you have experienced what a hospice can do first hand, it is difficult to fully comprehend their importance.
Caitlin was only 17 when she lost her beloved mum, Tracy, to bowel cancer. She died at St Helena Hospice aged 55. Leaving behind her husband and three children.
“My mum was lovely. She was so caring, and she was about making everyone happy. The day we found out everything, we all had a cry and then she got up and she was dancing, the life of the room, the life of the party. She was amazing. I miss her a lot.”
The incurable diagnosis of bowel cancer came as a huge shock to Caitlin and her family, “The cancer was caught late. My mum was quite healthy and so it came as a shock. Week after week it spread, it was really aggressive. I wasn't expecting that outcome, that's for sure. In the third week of her being diagnosed, we found out it was end of life. She deteriorated within four weeks of diagnosis, and we ended up at St Helena Hospice.”
When a bed became available, initially the Hospital was unsure if Tracy would survive the short journey from the Hospital to St Helena Hospice.
“It was pretty traumatic, they told us at the Hospital, they didn't think she would make the journey, and it was really upsetting.”
With her mum’s health deteriorating so rapidly, there wasn’t a lot of time for the family to process the fact she was dying. The Hospice instantly gave Caitlin and her family the opportunity to breathe, and process this. Caitlin explains, “I went and sat outside in the garden and it's the first time I had fresh air in about two days. It was nice to have fresh air and just to be away from it all for a second because I'd been in the thick of it for weeks.”
Once her mum was settled in the Hospice, the priority was to make sure she was as comfortable as possible. Then they were able to ensure her family and friends could make the most of the time they had left together.
Caitlin recalls that night, “It was nice because we played music, and the nurses thought it was brilliant that my mum was singing Abba and Whitney Huston. She could not sing! It was quite amusing; we were all singing with her. It was emotional but nice. We have a Spotify playlist called ‘Mum’ with all the songs we played. It’s nice to have the songs and I've got nice memories of that Monday night.”
A hospice is somewhere to feel at home. A world away from the cold hospital corridors of the NHS. St Helena Hospice allowed the family to make Tracy’s room really feel like it was her own. Caitlin details, “We put up loads of photos in my mum's room so everyone could see them, and the nurses said how lovely they were. My mum looked completely different towards the end, so it was just nice to have the photos there of the whole family, about 50 photos. We stuck them all to the wall around her bed. They came from my bedroom, they were spares and I have them all in my room anyway, so it helped me a lot because it sort of felt like my bedroom.
“I remember when I was putting them up, we all were crying and laughing because some of them are quite funny of my mum. People got upset at the wedding photos and when we were playing songs, we played their wedding first dance song.”
St Helena Hospice was a home away from home for the whole family. Allowing family and friends from far and wide to have the chance to say goodbye to Tracy. Caitlin remembers, “It meant a lot that we could have all the family there. The staff were really accommodating as we were there for five days and my whole family camped out there. Because it happened so quickly, we hadn't even told people that she had cancer, we didn't have chance. But then distant family came from all sorts of places to see her. People were there from 8 o’clock in the morning till 8 o'clock at night, and the staff were incredible to let that happen. I felt bad at points because there were so many of us there, the nurses could barely get in the door.”
These special moments are immeasurable when you are cherishing the time left with your loved one. St Helena Hospice aided Caitlin and her family to make memories with their mum that will last and gave them a calm place to say goodbye.
St Helena Hospice didn’t only provide support for Tracy at the end of life, they supported Caitlin and her family to come to terms with losing their mum and helped them process the grief after she died. Caitlin describes, “In the beginning when we got the diagnosis, everyone was getting counselling from Macmillan, but I wasn't able to get any because I'm under 18, so I had to go through CAMHS (Child and Adolescent Mental Health Services), but I'd already been on the waiting list for a while anyway for anxiety. Not having counselling when this was all happening was quite hard. Not having anyone to talk to, especially with my previous anxiety, was just a lot to take in on my own.
“When I got to the Hospice, Julie the counsellor already knew about me, and she came to see me within a few hours of me turning up. It was nice to have someone there for me, even before my mum died, someone that sort of already knew the situation and who wasn't family.
“She was there for me from the get-go. She was good for the whole family really. She came and spoke to us all briefly and she'd catch me in the corridor when we were walking through. I could speak to Julie throughout the week we were there, not for too long so I wasn't away for too long from my mum.”
With Tracy’s illness declining at such a rapid pace, they didn’t have a lot of time to prepare for her passing. Caitlin recalls a special memory that stuck with her, “I'm a massive Harry Styles fan, and on 19th June, two months before she passed away, my mum, my sister and I were at a concert in Wembley and we have all those photos, and that's the last thing we did with her. The last thing we did with my mum was being dressed up in feather boas and cowboy hats! It's a nice memory to have.”
Just four weeks after the diagnosis, Tracy died. Caitlin recalls the moment, “She passed away with just us there, the four of us, my sister, my brother, my dad, and me. I remember every day thinking is it today, the last day? Then the Saturday morning, it was before 5 o’clock, I remember my sister was on the air bed that night and she was so loud getting off it to go to the toilet, it woke everyone up. As she was walking back to bed, my dad went ‘she's not breathing’. We all sort of woke up properly and she had stopped making the noise. And then she sort of opened her eyes and was looking at all of us and we sat around her and then… yeah... 5 past 5 exactly. It was very special. It was the way she would have wanted to go.”
Caitlin knew this was the best outcome for her beloved mum. She details, “I sort of have a very positive outlook on this in some sense that my mum would have hated going on with the chemo, she would have hated it. She would hate losing her hair, she would hate being sick, hate everyone waiting after her. I felt the way it happened was the way my mum would have wanted it. It was quick yes, and it wasn't nice, but it was the way she would have wanted it. It was very peaceful.”
Caitlin tries hard to keep positive about the situation, knowing that her mum wouldn’t want her to be sad. But she has good days and bad. “My mum would not have wanted me being upset and just moping around. I mean, I have my days, obviously everyone does, but I sort of try and keep positive about it. I know my mum's death was peaceful and she was at the Hospice, and she wanted to be there. I've got a lot of support with Julie, she's a massive help.”
“It all happened quickly, every single week it was something new. It was a lot to take in. I don't think I really took it all in until after my mum died. I have these moments where it reality hits and it's just intense. And then I think I’ve got things to do, I can't be sat here crying, and then I pick myself up and keep going. Julie had it all every week; I'd go to counselling, and I'd either be laughing, or I'd be crying.”
It has been difficult for Caitlin to adjust to life without her mum. Losing her at such a young age means there are a lot of significant events that she won’t be able to share with her. “I was very close with my mum and it's going to be hard but I'm just going to get through it because I'm going to go to university.”
She is grateful for the support St Helena have provided. She explains, “I wouldn't have been fine without Julie. Honestly, I can't rate her enough. She’s been incredible. When we first got there, we were in a whirlwind and Julie came and saw us, ‘hi I'm Julie, the counsellor’ and she kept saying it so I would remember, so now that's what we call her, Julie the counsellor, that's her nickname. It was nice knowing she was there walking through the corridors and popping her head in the door and having a chat with us. It was just nice knowing I had someone for me and that there was a plan set up for me after this all happened. I feel that was something that the family was quite stressed about, that I had nothing, so they were relieved then when I got Julie. She went above and beyond which I think everyone does at St Helena.”
Like many of us, Caitlin didn’t really know the significance of the Hospice until she experienced the care given to her mum and family. She details, “I had heard things about the Hospice when family friends had gone there. I'd heard about how they let them have alcohol if they want and their dogs could visit for example, and I just couldn't imagine a place where you could do that when you were so unwell. And then actually being there, it was just such an eye opener. It was pretty incredible going there. I mean, who would want to visit their mum at a hospice? But if you have to, St Helena Hospice is the place to go.
“The hospice was a place for me and my family to come and spend time with my mum in her final days, that wasn’t loud and busy, and meant that we could spend time with her, and just focus on her.”
St Helena Hospice provide care and support to lots of people in the local community just like Caitlin and her family. Helping them navigate the unimaginable. But hospices are facing an uncertain future which means these critical services may not be here in the years to come. The financial crisis is having a devastating impact on hospices all over the UK and St Helena Hospice is no exception. 96% of hospices will be budgeting a combined deficit of £186 million by the end of next year.
St Helena Hospice need to raise 73% of their income from the local community to keep these services running. By playing Your Hospice Lottery for as little as £1 per week, you are giving them an income that helps them secure their future.
£1 may not seem like much, but when combined with the power of everyone in the local community this has a huge impact. Last year alone St Helena Hospice’s lottery supporters have raised over £757,000!
Caitlin was so moved by the support her family received, she now gives back by working for them and playing Your Hospice Lottery every week too.
We couldn’t help families like Caitlin’s if it wasn’t for you. Thank you.