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“They were our life support and our anchor”

Saya, whose Dad, Atul, received care through our hospice at home team in late 2017 said of the hospice: “They enter your life at a time when it is crumbling around you and you don’t know what to do or where to go or how to feel, but they are there just quietly holding your hand all the way.”

Atul first became ill after being diagnosed with an aggressive brain tumor in March 2017.  Saya recalls the family’s despair at being told that he was likely to only survive 15 months:

“When something like that happens the world around you seems to stop. It’s like time stands still, the world fades away and you are in a bubble of non-reality functioning on autopilot.”

A month later Atul had seven hours of surgery to remove as much of the tumor as possible. He recovered well and the family were hopeful but in the following months he started to deteriorate as the tumors came back and the impact of surgery, chemotherapy and radiotherapy took their toll.

In November 2017 hospice at home nurses began visiting Atul a few times per week for a couple of months and Saya recalls how important that care was: “They were just amazing and put us at ease right away. The most professional and compassionate people. We quickly began relying on them and they fitted right into our routine and our family.

“We appreciated being involved in all of the decisions about Dad’s care, the flexibility and individualized approach. It did not feel like we were getting standardized care at all. Everything was arranged to work around Dad’s and our needs. He became forgetful and confused, he didn’t like change and would call for my Mum every time she wasn’t in sight so when hospice at home began getting involved it was an adjustment for him and he was resistant. Sure enough, within a short time he became really fond of them all and would smile each time they visited. They won him over with ease. Staff were so professional and above all else just really kind and gentle. Nothing was a problem and they were not phased by anything.”

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Saya also recalls the amazing support the hospice at home team were to her Mum and other members of the family. “Mum thinks of the hospice at home staff as ‘angels’. She would say this often, and still does. For her they were such personal and valuable relationships because they understood her in a way that nobody else could. They would encourage her to use the time when they visited to go out for a couple of hours and even when she refused because she just couldn’t face it or didn’t want to leave Dad, they would gently encourage her to pop out for a quick walk around the village. They were always very genuine and honest about Dad’s condition and what was going to happen, but in a very gentle and caring way. I suppose they knew the stages my Dad was going through and what was to come, as well as the stages that we as a family were going through. They understood it all in a way that we just didn’t and they advised, reassured, comforted and prepared us for it all.

“Every time I went back to London for a few days, I was reassured in knowing they would be visiting and not only taking care of my Dad but also supporting my Mum. It felt like we were not carrying all of this pain and fear alone, we had support from people who genuinely understood what we were going through. While we had advice and guidance, I also feel like staff allowed us to go through our own process as a family so it was just the right amount and just the right kind of input. Words cannot express how grateful we are.”

“The way the staff engaged with my Dad was really amazing and they made him, and us, smile all the time. Those hours of support were such a relief because we were so sad, scared and anxious all the time. One staff member suggested taking some close up pictures of our hands holding Dad’s hand. Looking back I think it was because they understood that we wanted to capture moments with him towards the end, but that pictures of him in that state would be perhaps hard to look at; it was such a simple and thoughtful suggestion. I was also struck by how culturally sensitive and aware the staff were. We are an Indian and Hindu household and the staff seemed to have a great awareness of our culture, family and traditions. We always felt very understood. In fact Mum mentioned that when she visited a family friend in the hospice inpatient unit last they visited the Chapel and recalled that next to the Christian cross there was a small ‘aum’ which is a Hindu symbol and which is a wonderful gesture, that reflects the whole ethos of inclusion and kindness at Cynthia Spencer.”

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The wider family were supported just as much by the hospice team Saya remembers: “My Brother’s daughter, Mali was six when Dad died and they were literally the best of friends. It was tough on her to see him decline the way he did and the hospice gave her a memory box which was just amazing and still means the world to her. I know she treasures it and still adds thing to it often. Psychologically it’s a great way for kids to process the trauma of loss and to express their grief. The memory boxes are a fantastic idea for kids, and maybe even adults.”

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Atul passed away at home at 8am on May 26th 2018.

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And of the family’s future relationship with the hospice, Saya concluded: “My sister-in-law raised around £1,500 for Cynthia Spencer by doing a facebook live gig during lockdown recently. Also, it has now been two years since Dad died and while it is still raw, my Mum is planning to volunteer at the hospice. I think she is going to be an amazing volunteer and I am so proud of her!”

Thank you Saya for sharing your story and highlighting the amazing care given to patients and families by our hospice at home team. 

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