Supporting Mum over the last year as an only child: from misdiagnosis, diagnosis, prognosis and end of life

Misdiagnosis/ Diagnosis/ Prognosis: Mum had experienced incontinence for a number of years and put it down to old age. Her symptoms worsened in Jan 2024 with blood clots at times when she passed urine. She kept these symptoms hidden but was clearly scared looking back. In the Summer she was misdiagnosed with UTIs and given 4 concurrent courses of antibiotics with no success. I pushed in September for a Dr to come to examine Mum at home and she saw vaginal blood and this alarmed her so actioned hospital checks. From that point on everything moved quickly but mums condition and symptoms worsened too. We were faced with week after week of scans/ tests/ appts at hospital (each one being a trial and physical effort for Mum who was housebound) . The levels of anxiety for myself (who at this point was still working full time) and for Mum were incredibly high. Having lost my Dad to blood cancer 5 years ago, we felt overwhelmed by what was to come. In October we received the news that we were both expecting but were still devastated. When diagnosed, mum faced an operation to remove the bladder tumour (a real ordeal for someone so frail) to not cure but simply assess the stage of the cancer. The moment I sat waiting in a room on my own while the team battled to bring her round, whilst sat beside a Christmas tree was a contradiction I will never forget. But Mum battled on with determination and quiet reflection. The original time scale of 1-2 years without treatment soon changed when in the January mum was admitted to hospital due to increased bleeding/ problems with catheters etc. We were told by highly skilled consultant and palliative care nurse that 'weeks' not years or months would be what we had left together. At this point, I took sick leave so I could be alongside mum the whole way. She tried to manage at home with a PA/ carer and district nurse input but her pain was not being managed effectively enough and we made the decision to look for a nursing home so her morphine and anticipatory medications could be given when needed.

Finance: Mum was under the threshold of £23,000 so I filled out more forms than I have ever done in my life, to secure social care funding for her care at home. We were blessed with a wonderful social worker who kept battling for more hours as mums condition declined. She was receiving attendance allowance. Money for her living at home was not our main issue or worry but I can see why it would be. I was very aware that if I had not been around, Mum would have not been able to action any of the support I instigated and this was a real concern for me. I also actioned fast track when we had the diagnosis of weeks and sought a local nursing home which had a fast track / end of life suite. Had I not done my research, asked the right questions, I know mum would have had a very different last few months of life and also know that she would have passed far sooner.

End of life experience 

My mum, Angela, spent the last four weeks of her life at Wren Hall Nursing Home. After a long, yet rapidly progressing battle with bladder cancer, Mum reached the point in February 2025 where her care at home was compromised and her medical needs were requiring more expert attention.

Led by a comment made by our social worker months prior to this,  where he had stated that “Wren Hall was the best in the county” I selected this home from a fast track list of hundreds and was lucky enough to have my call answered by Bill. Within the hour, I was shown around the home and taken into the end of life suite. I was incredibly anxious about this and very emotional but from the very start was treated with care and compassion. My mum had lived at her beloved family home for 70 years and wasn’t that day contemplating ever moving in this last season of her life.

A frank conversation followed which was helped by a very approachable Bill reassuring Mum that she would be well cared for, answering her questions and then proceeding to sort out the administrative details that to be honest, I could not face.

Within 2 days, my mum was collected from her much loved Brinsley, by a wonderful man with a lovely smile who assured myself, her carer and neighbour that she would be absolutely fine. On arrival, it made it so much more welcoming that I had been asked to drop her belongings off the day before with flowers, photos, cushions etc in her room when she arrived.

From day one, everyone we encountered was incredible. Within a few days, I felt familiar with the home and staff and on every visit, I was greeted with a smile or a wave by all staff. A member of the maintenance team providing me with a kettle , biscuits and milk in the fridge nearly made me cry as these little touches make all the difference when you are on your own. Mum’s situation (having been told that Mum only had weeks to live) meant that she was quite happy to stay in her room. I was committed to visiting every day and I had scheduled a highly choreographed programme of Mum’s nearest and dearest who were to visit over the next few weeks. This was a decision that was to prove crucial in mum’s motivation to keep fighting. She wanted her chance to say goodbye to those she loved, laugh over old times, look at family photos together. I know that when these loved ones came to Mum’s new home, they too were made to feel welcome, being personally brought to her room, offered a drink and felt no pressure from anyone re timings. Even her personal assistant visited in her last week of life after her shifts at 9:30pm and this was still made possible with no concerns from staff. When the minister came on two occasions, staff were particularly respectful and interested in this vital part of the process of mum ‘letting go’. Some staff even spoke to mum at times about her faith and it meant such a lot to her that one young carer, when putting mum to bed, said “goodnight God bless” as mum said this to her. The presence of some other carers who too had a faith was another reason why for Mum this was very much the right place for her to be in her last weeks.

There were so many moments of magic that happened in this last month. In many ways, in Mum’s declining state physically, she came ‘alive’ in a way we couldn’t have believed was possible. Beautiful relationships were formed with a range of staff, from cleaners to the maintenance team, to highly skilled nurses to the carers, Mum loved lots of the staff and made no bones about telling all her visitors how wonderful the staff were. At one point, I commented that I wasn’t sure what the interview process was at Wren Hall but that they had got it exactly right. The way that every single member of staff was ‘moulded’ in the Wren Hall way with such high expectations and such wonderful smiles, was truly astonishing. The fact that 4 of the staff were mum’s former pupils was even more special and seemed very fitting in terms of Mum’s life coming full circle. She was not always an easy lady to please but also felt so valued and able to say when something wasn’t quite right.

As a visitor to the home, the music that greets you when you walk in, lifted your mood immediately. Music has always been special to us both, so when mum neared her end, the CD player in her room was on a constant loop with a mix of her favourite music.

Personally, the relatives gateway portal was a godsend and alleviated much more my worry when I wasn’t with mum as I could check on her and knew exactly what she had eaten, been given in terms of medication and even what her mood was like.

When there was a concern regarding mum’s increased needs, all staff listened, communication was key and all queries were answered.

I was constantly amazed by the expert knowledge that the nurses showed and how they knew when to escalate medication. The link with the local surgery was also invaluable and a visit by the Dr was much appreciated.

After 3 full weeks, it came to Mum’s last week and the stream of visitors stopped, as Mum tired. I had started to believe that Mum would carry on this way for many months, so a realisation that Mum was fading, brought more anxiety my way. That said, the continuity of staff who I trusted completely and again, an honest communication where the office staff relayed my questions or fears, helped the last few days be as special as they could be. Mum was undoubtedly in great pain and although it was expertly managed as was her personal care, there was a realisation that death does not always come when you or  your loved one thinks it will. We both questioned why, when Mum was ready to pass, she was having to endure so much pain and indignity. But the way the carers took into account Mum’s situation and multiple needs was phenomenal as was how I was always invited to take some time out and only come back to Mum’s room when she was clean and settled once more. In these last precious days, I appreciated mum and I being left alone, but also knew that someone was only a few steps away if I needed it. Hugs were given when I needed them most. Mum was still able to laugh, engage with staff and was ‘sharp as a button’ till the end. When the last day dawned, a call from the home to warn me that Mum was still sleeping and to expect that a turn for the worse was on the cards, was appropriately timed and prepared me for the day ahead. I was never left abandoned, although I was on my own, office staff, nurses and carers were there for me at the drop of a hat. I was guided through each hour with such care and this alleviated any fears for me or my family. Mum’s personal care was still undertaken with respect and tenderness. Never more had I appreciated the wonderful relatives room than on this day.

I will never forget the way that Mum’s room was reset with her photos of loved ones on her bed head, her Bible by her side, her beloved cuddly bunny and holding cross never far from her grasp. The last moments were so incredibly peaceful and I would not have changed a moment of that passing. The way that the staff attended to me, my daughter and most importantly Mum was with genuine love, tears were shed by us all, which meant such a great deal. The way the nurse in charge spoke to Mum after her passing in exactly the same way she spoke to her in life, asking mum’s permission to take her pulse,etc was truly beautiful.

The time after Mum had passed was equally precious and nothing was rushed. Even our last visit to the home to take Mum’s belongings home, was a truly special time, with many staff coming to greet us, hug us, and reminisce with us about Mum’s stay. Even staff who hadn’t previously cared for mum or met me, came to share their condolences. That Saturday after she passed, I never wanted to leave and I will personally miss Wren Hall greatly.

I could  never express my thanks enough for what I experienced in this last season of mum’s life. The way Mum’s end of life care was managed at Wren Hall was instrumental in the way I have managed my grief afterwards. To be able to have fond memories of Mum’s last weeks, days and minutes, was something I wasn’t expecting. It surpassed all expectations and I know that she was truly at peace. This has then left me with a contentment and peace to be able to move forward without her.

I feel passionately about ensuring that every relative has the opportunity to access what we had the privilege to receive. Having experienced an end of life experience that was not like this one, I know this is something that cannot be taken for granted.

I have learnt that death is not always ‘pretty’ or as we would wish it and with a particularly aggressive form of cancer, this was not going to be easy. But I know it could not have been managed better.

What more could anyone ask?