We cared for Zana’s mum, Freda in three settings: at home, in a care home in the community and then our inpatient unit in Clapham. Zana’s experience of our care has left a hugely positive impression on her – describing us as her ‘refuge’ in her account.

“By the grace of God, because of the hospice, I can say I am at peace with myself. Mum got the best in care and the kindness mum received extended to me also.”

“Verily with hardship comes ease” is a Quranic verse.

During mum’s hospice stays, my mother and I lived the meaning of this verse as we were met by humanitarian hospice staff, all of whom respected mum as a whole being, and made us both feel at home practically, emotionally and spiritually. In fact, the door of compassion never closed. From day shift to night shift one staff member after another arrived smiling, and was always there for a catch up.

Mum had been through a lot in a very short space of time. It was one devastating diagnosis after another; heart disease/attack, stroke, cancer, in quick succession. She also had a long past with feeling mentally distressed. Yet, at a time when most might crumble, her strength arrived and exclaimed ‘hello.’

Supported at home and in the community

My first interaction with Royal Trinity Hospice was in 2022 after mum was admitted to hospital and it was then that I realised, I was also struggling. Early on, Trinity’s Community Palliative care team impressed me a lot. Nurse Abi especially so. She never failed to get back to me, and always responded to the level of urgency that mum’s health was presenting. I appreciated the intuitive response to mum’s changing care needs.

Mum’s changing health circumstances meant that she had to go into a care home, due to trouble breathing and other complications. Joanna from Trinity’s Community Dementia team regularly visited mum at the care home, meaning we had continuity in her care. She was excellent, responding to my phone calls and giving me time to talk to her.

A space to reconnect

When mum was eventually referred to stay in the inpatient unit, her room was on the ground floor. By virtue of the patio doors and beautiful garden, mum got moments of escape and finally got the feeling of the sunlight and breeze on her skin, and bird song.

The hospice was indeed a refuge, giving mum and myself space to better connect, leaving us in a good place in our relationship as mother and daughter. There I felt guilt-free to stay with her because there was enough room for both of us to be together, enabling me to move into her room. The staff provided me with a bed and always asked me about breakfast too!

Patient and Family Services team (PAFS) shining out

Kelly from the PAFS team was absolutely brilliant. She supported me whilst mum was cared for in the community and our chats helped me to keep myself together and keep going. When mum was on the inpatient unit, she would regularly drop by mum’s room to touch base and encouraged me to go out into Trinity’s gardens or go for a walk with me.

Nicholas from the spiritual care team is an awesome character! He possesses a gravitas that had a calming influence on mum. Mum could get distressed when I would leave her and on one visit, I returned to the room to find her calm, holding Nicholas’s hand.

He also helped to connect us with the Imam from the local mosque in Balham, who later visited mum’s bedside to do prayers for her. Mum appreciated this a lot.

Space for the family to be together

We had a lot of our family there - at times ten of us in. All of the family valued the nurses’ knowledge when asking questions about mum’s care. When my young nieces and nephew visited they would go to the play corner to play table football or play on the piano or go see the fish, ducks or cat in the garden.

The hospice created a nice space in which mum could still be a grandma to her grandchildren. I was able to decorate mum’s room for her grandson’s birthday with homemade bunting, whilst hospice staff provided art materials for the children. This meant that mum was part of the celebrations.

When it was my own birthday, the family had a picnic on Trinity’s lawns. Nurse Rebecca organised a birthday cake for me that arrived with a note from the kitchen staff, all of which really moved me because I had only mentioned my birthday in passing.

Meeting religious traditions

On the morning that mum died, Rebecca woke me up gently saying that ‘there’s something I need to tell you.’ She told me that mum had died in peace just ten minutes beforehand. I hugged her and she then gave me time alone with mum.

Rebecca supported the family throughout the day, providing consolation to my sister especially, and I always felt she was there at all the important times.

In Islamic tradition the body is laid in white shrouds and there is no coffin. It was important that mum’s body was prepared for this, with the next step being a ritual wash at the mosque with holy water and rose and camphor essences.

Rebecca supported me when the funeral director came to take mum’s body away.

For practicing Muslims, it is important that a form is signed off immediately to facilitate quick burial, ideally the next day. Rebecca kept oversight on this and also helped me to register the death with the Registry office. In keeping with Islamic tradition, we could bury mum the next day even - and this was thanks to the proactive approach to the paperwork by the hospice staff.

Mum was buried by a tree - ‘the kind of tree that she liked to climb as a young girl,’ her sister reminisced. Laila (mum’s previous carer) live-streamed the funeral for relatives abroad. I imagine that things went as mum would have wanted.

In retrospect, for mum, the hospice became not only a place for her to die in peace, but also a place for her to live with more meaning, in as much as it was possible.

 

Thanks to Zana for sharing her account.

In keeping with the family’s considerations around using images, this story did not include further photos, instead keeping the focus on the narrative of Freda’s care.

Thumbnail image: credit - family handout