“My ultimate goal was to get well enough to go to my daughter’s wedding…thanks to Isabel Hospice, I made it.”
Before being admitted to the Isabel Hospice In-Patient Unit (IPU), Helena was living with acute pain, overwhelmed, taking contradicting medications and unable to truly live her day-to-day life.
Born in the Netherlands and currently living in Welwyn having been in Hertfordshire for many years, Helena is diagnosed with progressive systemic sclerosis, an auto-immune group of rare diseases that has no cure. Due to her condition, Helena experiences spontaneous bone fractures, she explains “I always have to be careful, all the time, it can happen at any moment”.
Late last year, Helena experienced such a serious fracture that it led to broken bones pressing on her spinal cord. As her pain became debilitating, she was referred to Isabel Hospice for complex pain management and symptom control, which turned her life around.
Helena said, “[one of the Isabel doctors] came out to see me and he told me that my back had a very serious fracture and that I had to be careful, or I would get to a point where I wouldn’t be able to feel my feet anymore and would have to go to hospital.” she says. “I was also on too many medications that were working against each other with so many side effects that made my conditions worse; so much that I wasn’t able to genuinely experience life day-to-day because it was so consuming.”
Helena had some concerns about going into the IPU but once she arrived, her opinion was forever changed.
She said “I was very scared, but it was different from what I thought, it was amazing. I had my own room, and the nurses would come and chat with me about what my goals were for my time there. It was never about what their goal was, they always explained everything, and I was involved in every part of the process. I’ve never been in control of my care like that before.”
For Helena, her goal was set from the beginning. She said, “My daughter is a doctor, and she lives in Germany. She was just about to get married, and the Church ceremony was held here in the UK between Christmas and New Years, so my ultimate goal there was to get well enough to the wedding and thanks to Isabel Hospice, I made it.”
“It really worked because the whole team did their best to help me achieve it, they made changes when needed and were all aware of what was happening with me,” she says. “I was totally in control of my own care and goals, you won’t get that anywhere else.”
“My entire family didn’t have a clue; I told them all I wasn’t going to make it [to the wedding]. Everyone was so surprised when I came in, half of the church started crying. My daughter didn’t even know but she was so funny, she said ‘I knew it, Mum! I knew you wouldn’t miss it!’” Helena laughs as she reflects. “Even her partner started crying!”
There is an entire team at the In-Patient Unit dedicated to providing holistic care for every patient. Helena experienced this first-hand, sharing, “I worked with the physiotherapists every day to help me walk properly again so I could attend the wedding.” She also found great comfort in talking with our spiritual care co-ordinator. “She would visit me, and we had some really lovely chats. She’s so kind and down-to-earth.”
“To be honest, everyone on the team was wonderful. Nothing was ever too much, and it was all about the simple things. I don’t drink, but I was offered a glass of wine. If I didn’t want to order from the menu, the kitchen staff said I could order anything and they would try to make it for me. It was lovely and thoughtful because my husband was there every day to eat with me.”
“It really is amazing how all the staff know you. From the cleaners to the specialist doctor, they all know you, they all chat to you and it’s like a big family. It helps you to just forget about yourself, and at that point, you don’t feel ill anymore. You’re just being part of the family. I can’t begin to tell you how much of a difference it made and how grateful I am.
“And to think it’s all charity; you just can’t believe it. If I had enough power that I could tell the world, I would tell the world! I don’t mind being that person to say how great it is. I’ve been there and I feel so strongly about it.
“If I got all my wishes, I would never go to hospital again. If I was ever offered the opportunity to go back, I would go straight away…
“It was life changing.”
We could not provide life changing care to patients like Helena without your support. Isabel Hospice needs your help to keep caring for our community. Please donate today.
