Pat and Maria’s Story

Supporting Pat and her family

Maria Twomey had been working as a healthcare assistant in the Rennie Grove Peace Inpatient Unit for two years when her mum, Pat, was admitted there for end of life care.   

Maria talks about how letting go of the responsibility of her mum’s care was the hardest thing she has ever done, and how sitting on the ‘other side of the bed’ has changed her perception of what she does and made her even more proud of the care she and her team provide.  

Maria says: “My mum had cancer for 10 years.  It started in September 2013, when she was diagnosed with a neuroendocrine tumour on her pancreas for which she had chemotherapy followed by some operations.  She was then fine for ages, but in 2016 the same type of tumour came back in her liver. Mum had a liver resection, where she had two segments of her liver removed, which again left her feeling well and better for a time.  

“But in 2021 her health started to suffer again, and her diabetes was all over the place.  She went to hospital for a regular scan which showed there was a mass on her pancreas. At that time, she was also having fortnightly Lanreotide injections at home which halted the progression of her tumour.  From July 2022 to Christmas time, mum had several biopsies that were inconclusive which meant we were constantly in limbo, not knowing how unwell she was and therefore what treatment she needed. In January it was confirmed that it was a new cancer on her pancreas.  

“In February 2023 she had one more round of chemo, but she ended up getting sepsis.  She returned home, only to have to return to hospital to replace a stent in her liver, but the hospital team could not get the stent in.  At this point the doctors told us that nothing more could be done for her and within a day she was discharged from hospital and back home. 

“In March 2023, the Rennie Grove Peace team visited Mum at home for a period of nine days.  I practically moved in with Mum and Dad at that stage. They put her on a syringe driver to manage her pain and provided a hospital bed and toilet commode. Carers came four times a day, but she was so unwell, not eating or drinking and unconscious some of the time, and I was exhausted.  In the end, I asked for Mum to admitted to the Inpatient Unit.  

“I provide care for people in the Inpatient Unit every day, but when it’s your mum being cared for it’s different.  Before she arrived there, I took all of her belongings to make her room more homely – flowers, balloons, photos of her grandkids, cards, and her blankets.  Dad came with her to the Inpatient Unit in the ambulance. He was like a rabbit in the headlights, but he trusted my judgement.  When Mum was safely in her room at the IPU, I knew I had made the right decision.  Her room was full of her things, so it was like she was at home.   

“We could visit whenever we wanted, and we took it in shifts. Dad stayed with mum for the whole three weeks she was there, sleeping in a bed beside her.  My sisters and sons came to visit every day, staying all day. Sometimes they would come and ‘tuck grandad in’ at around 11pm.  My brother-in-law used to come every night to share the last cup of tea of the day with Dad. 

“We bought the dogs in too, which some of the other patients and their families liked.  I could finally spend some quality time with Mum and become her daughter again, not her carer.  My colleagues did all the things I do every day for other people, but I was looking at it from the other side of the bed.  

“I had my 50th birthday at the Inpatient Unit when mum was here.  We wheeled her bed onto the patio and Dad and I had a gin and tonic. The nursing staff bought me cakes, it was lovely. 

“My four sons visited their nan often and it was nice for them to see her when she was comfortable.  For me, taking that step to move Mum to the Inpatient Unit and let go of the responsibility of her care was the hardest thing I have ever done.   Up to that point, I had done everything with Mum – hospital appointments, scans, blood tests, the lot.  All of a sudden, I had to let go and let someone else take over.  

“I was there when Mum died, alongside my dad and my aunty who was my mum’s best friend, and my youngest son.  They gave us as much time as we needed in the room. The nursing team was great, they dressed her in some clean clothes and night dress. Then we all said our goodbyes to Mum and came home. 

“After Mum died, I attended a Bereavement Support Group and took some time off.  My family bought a Memory Tree Leaf for mum which I see every day in the Inpatient Unit.  Sometimes I sit under the memory tree and have a cup of tea!   

“I thought it would be difficult coming back to work, especially going into the room where Mum was cared for and died, but I feel close to Mum at the Unit.  I know 100% that my mum had the best death she could have had, and that makes me happy. She had everything she needed. My Inpatient colleagues have been an amazing support too. 

“Mum was such a special person.  She was my best friend and biggest supporter. She was always playing Motown and would be first on the dance floor as well as the first to check out a party buffet!   Mum was fun, but also very firm. She was always the person family members would go to when they needed advice or support because she would listen and not judge you.  She loved her family, four daughters and a son, and it gave her immense pleasure to see us all together with her grandchildren.  She was a carer herself for many years, working in a care home for older people, then moved to support those with special needs.  

“Mum was also very organised. She had written all the instructions for her funeral in letters to me and my brother and sisters, and one for Dad. In the letters she told us what she should wear at her funeral, who she wanted to do the readings and what food and drinks we should serve.  She had dentures and she asked for her teeth to be in, so we gave her teeth to the funeral directors! The only instruction we didn’t follow was to not spend money on fresh flowers.  She didn’t want us to spend a lot of money, but we knew how much she loved fresh flowers, so it was our little rebellion!    

“Before Mum came here, I knew how amazing the Inpatient Unit is – all our staff working together as a team to help people and their families.  But sitting on the other side of the bed, it changes how you look at it.  I’m now even more proud of what I do, I am so proud of our team and our hospice, I now truly understand how valuable the services are that we provide and I feel honoured to do my job because people are coming here when they are at their most vulnerable.  They are scared and we provide a safe place and look after them. When a patient and their family come through the door, I can recognise that sense of relief because I have personally experienced it.”