“At the hospice, I was able to become Mum’s daughter again instead of her carer – and grant her final wish.”

Sue Ryder Thorpe Hall was the first step in a process that completely changed my grief journey, and my views about what a hospice is.” These are the words of Emma Rayner whose mum Clarissa spent her last two weeks at our hospice in Peterborough. In this blog post and moving video montage, she shares her family’s story.

Emma put together this video, which recounts her family's journey.

My mum was cared for at Sue Ryder Thorpe Hall Hospice during the last 14 days of her life in October 2017.

Mum being transferred to Thorpe Hall was the first step in a process that completely changed my grief journey – and my views about what a hospice is and what it does – for the better.

“As we approached Thorpe Hall, a peacefulness fell over me”

When we were told that Mum was going to be transferred to the hospice from hospital, I was scared and, being brutally honest, did not want her to go there; my Nan had died in the hospice 22 years ago when I was just 13 so I only really associated Thorpe Hall with bad memories.

I got into the back of the ambulance that transferred us to the hospice that Sunday morning with a knot in my stomach, reminding the paramedics that if anything happened during the short journey she had a Do Not Resuscitate (DNR) order in place.

As we turned onto the long driveway, I was amazed at the beautiful space and well maintained grounds, and a peacefulness fell over me that I had not felt in the three months since Mum’s cancer diagnosis. Every time I visited her and made the walk up that driveway, that same sense of calm and peace returned.

We were greeted by a warm and welcoming receptionist that morning and every time we visited thereafter. We didn’t just feel welcomed; we were made to feel at home – part of a very loving and special community – and that feeling continues to this day.

Within ten minutes of Mum arriving, my fears were totally allayed and I knew that she was absolutely in the best place.

Clarissa Rayner, who died at our Sue Ryder Thorpe Hall Hospice
"Mum was settled in and in her beautiful room at the hospice quickly, and then the Sue Ryder Nurses came and spent time explaining everything to us."

“In A&E, Mum was treated as more of an object than a person”

Looking back now, I know that my journey following Mum’s death would have been so different had she died, as expected, on the night she was taken into that side room in A&E.

I completely understand that the two settings are so different but it felt like nothing was properly explained in A&E, and that Mum was more of an object than a person. She was cared for and treated well, but in a mechanical way, rather than the amazing love and care that she, and we, received from the minute we arrived at the hospice.

Mum was settled and in her beautiful room quickly, and then the Sue Ryder Nurses came and spent time explaining everything to us.

Before Mum was transferred, we had taken our four-year-old daughter Isla to A&E to say what we thought would be her final goodbye, thinking that we wouldn’t want her to visit Mum at the hospice.

But, that very same afternoon, she was able to bring Mum some flowers, which Mum woke up to take from her, and then spent some time playing in the children’s play area, meaning she was happy and content, and we were able to spend time with Mum without feeling torn about where we should be and who we should be taking care of.

It was a great comfort to my husband and I to be able to talk with Jennie from the Family Support team and get advice about how best to explain things to Isla; it made us feel reassured that we were doing the right thing and less afraid to use the word “death” in our explanations to her.

In stark contrast to the two nights we had spent in A&E, Mum’s care was constantly explained to and discussed with us by both the doctors and the nursing staff. We were never made to feel that any questions were too big or small, and were always reassured that our worries and concerns were valid and normal.

“A home away from home”

Mum’s room became a home away from home, and we felt able to make it her – and our – own space.

The whole hospice was immaculately clean and well maintained so we felt confident in the standard and level of care that she was receiving. Housekeeping could regularly be seen cleaning and tidying, and nothing was too much trouble for anyone.

It was comforting to know that Mum was being cooked home-made healthy and nutritious meals that would help her get all the nutrients she needed and continue her fight against cancer; Mum even joked about having her own personal chef!

The coffee shop became my safe haven throughout Mum’s stay and it was in that space that I felt able to let go, meet friends, have a good cry, take a break, refresh and recharge. Since Mum died, we have returned to the coffee shop at times when we wanted to remember her, such as this summer when we brought Isla to have an amazing afternoon tea.

When we looked out of Mum’s bedroom window, the gardens – so lovingly and beautifully maintained – brightened each day. Again, the grounds became a safe and tranquil space where we felt able to come for quiet reflection and remembrance after her death; on Christmas Eve, Isla went to the gardens to release a balloon to send to her Nanny in heaven.

Five-year-old Isla Rayner releasing a balloon for Nanny in heaven in Thorpe Hall grounds
Isla releasing a balloon for Nanny in heaven.

“Making Mum’s final wish come true”

When staff found out that we had booked to take Mum away to Blackpool but would no longer be able to make this – her final wish – possible, they encouraged us to make it happen by bringing Blackpool to her.

So, on the day when we should have been leaving to make that special trip with her, instead of my heart feeling heavy and sad, it felt filled with excitement and love. I knew that, on some level, we would still have made Mum’s final wish come true.

The Sue Ryder Thorpe Hall fundraising team were amazing, gathering together items for us to use, as did many staff members, and that afternoon we were left alone to spend some precious time with her – making memories that have carried us through the hardest of days.

The Rayner family together at Thorpe Hall Hospice during their 'day out' at Blackpool
"Instead of my heart feeling heavy and sad, it felt filled with excitement and love."
Deckchair in Clarissa Rayner's hospice bedroom
Sue Ryder staff helped Emma decorate her mum's bedroom at the hospice with mementoes from Blackpool - bringing Blackpool to her.
Photos of Blackpool on hospice bedroom walls

Mum was a religious woman and took comfort in being able to talk with and access the support of the spiritual services within the hospice, and also loved being given the opportunity to try some Reiki.

When we were invited to the memorial service a year after Mum died, this was done beautifully and became not a sad experience but a truly uplifting one.

“Talking through the emotions of losing Mum”

This past year, I decided that I needed to look after myself and talk through the emotions of losing Mum on a regular basis. I was fortunate to be offered help from the hospice’s bereavement support group, which I attended every two weeks for almost a year.

The love and support offered in this space has been absolutely invaluable in my healing journey. On the hard days, when I sometimes questioned if I could cope and carry on, knowing that I had that truly unique and special space in which to share my grief with others who completely understood really kept me going.

From that, I have made a very special friendship group who I now meet with every other month outside that space. It is a very special feeling to be able to relax, laugh and joke with those friends away from the sadness that brought us all together. So I’ve made some very special lifelong friends, and I truly valued the chance to talk through my emotions in such an open, loving and non-judgemental way.

I was also assigned the most amazing bereavement supporter, Marion, to offer me some individual support. Having been through grief herself, Marion chooses to use her own experiences to help others when they need it most. Not once did she shrink away from my feelings and emotions but stood with me during the hardest of times, helping and encouraging me to properly explore my grief in the gentlest and most intuitive way.

For Sue Ryder staff and volunteers, like Marion, I am acutely aware that the pressures of day-to-day work probably make it hard to hold onto and remember all the good they are doing, day in and day out – not only in that moment when someone’s loved one is dying, but all the moments after that. But I want them to know that, every single day, they are making a huge difference  to people during the worst time of their lives.

I truly don’t have the words to express the gratitude I feel towards them.

The Rayner family
"Following Mum’s death, our daughter Isla became very scared of being ill. Thanks to Sue Ryder's Charlie Chimp Club, she is now the happy five year old we want her to be.."

“Helping Isla recover after Nanny’s death”

Following Mum’s death, our daughter Isla became very scared of being ill and wouldn’t tell us when she was feeling unwell because she was scared it meant that she was going to go to heaven too.

We were offered a place for her – and ourselves – in the Thorpe Hall Charlie Chimp Club and, over two weekends, she was given the most incredible help and support, and afterwards began to open up more fully to us.

The result is a little girl who has become much less anxious and worried about being ill, shares her feelings more openly, and is now the happy five year old we want her to be.

We as parents also learnt new ways to help her with her grief, met other families in similar situations, and were able to explore our own feelings and emotions.

“'Thank you' will never be enough”

Over the past 18 months, I have taken so much comfort in knowing that Mum’s last days were spent in such a beautiful place where she was cared for so gently, humanely and lovingly. It has made the grief of her passing just that little bit easier to bear – and that is a gift far more precious than anything else.

In those 14 days at the hospice, I was able to become Mum’s daughter again instead of her carer; we were able to give her her final wish and take her to ‘Blackpool’; we had 14 extra days with the person we loved so much; and I was given the extraordinary privilege of holding her hand as she took her last breath. Nothing will ever explain what these things meant to me then and always will.

As I take the first tentative steps towards a future without Mum, there is absolutely no doubt in my mind that I would not be at this point in my recovery had it not been for all of the love, help and support that Mum, myself and my family have received from Sue Ryder.

Mum may have only spent two weeks in Sue Ryder’s care, but the place where our lives fell apart when Mum died has also become the place where, slowly, I have felt able to rebuild my life. “Thank you” will never be enough.

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Author

Emma Rayner

Daughter of patient

Emma Rayner

Emma’s mum Clarissa died at our Thorpe Hall Hospice in Peterborough in October 2017. Along with her five-year-old daughter Isla, who attended the Charlie Chimp Club, Emma has received bereavement counselling from the hospice’s Family Support team.