"Securing social services funding for an end of life palliative care"

Last year Mum was experiencing huge incontinence issues and from May to December  a battle was had with different GPs, (who didn't communicate with each other) hospitals to diagnose and we were sadly far too late.  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 to access care at home. We were blessed with a hugely compassionate social worker who kept battling for increased funding as mum’s condition declined.  I was very aware that without me, Mum would have not been able to action any of this support.

When diagnosed, mum faced an operation to remove the bladder tumour to not cure her, but simply assess the stage of the cancer.  For a while,  Mum ploughed on but only due to her wonderful PA whose hours had now been increased to a staggering 6 hours a day. Not only did she care for mum in a way that I never could have, intimately and practically, but she brought mum back to life in many ways. 

This aspect of social care is one that not many are aware of, a Personal Assistant that Mum chose, who enabled me and Mum to then return to a Mother and daughter relationship rather than a Mother and reluctant carer. When admitted to hospital,  the original time scale of 1-2 years without treatment soon changed like a lightning bolt from the blue. A softly spoken palliative care nurse said that 'weeks' not years or months would be all that we had left together. 

We tried to keep Mum at home with her PA and district nurse input but her pain was not being managed effectively enough and I made the decision to look for a nursing home just so I knew she would be safe. Being safe, is for me the most crucial baseline for both those at the start and end of their lives. Safeguarding is given the highest of priorities in schools but again, with adults over a certain age, it is as if this just doesn’t matter. 

I had a scribbled down phone number labelled ‘Fast track’ and rang it in hope the rest would become clear. I was emailed a list of 100+ homes and this is where ‘luck rather than judgement’ played its part once more. I rang a random nursing home. The home we chose only had 1 ‘end of life suite’.  I will never forget, the manager's kindness and honesty, as I asked “do people actually die in this room?” or the quandary I was in.

Had I not done my research, asked the right questions, I know categorically that mum would have had a very different last few months of life and also know that she would have passed away far sooner. This lottery regarding end of life/ palliative care needs addressing so that it is less of a game of luck. I am also fully aware in this climate of debate regarding assisted dying, that my view has indeed changed. As Mum was at this cusp of moving to Wren Hall, she could (to my knowledge) have made the decision to end her life at that point.

She had been told she had only weeks to live, it was terminal cancer, of sound mind and she was suffering escalating pain and real indignity. Prior to this, I would be the first to fight for our right to end our life as we wish and be responsible for making our own, informed decisions. But if this had been the case, myself, her much adored granddaughter and countless family and friends would have been denied the priceless chance to be with mum in what was to be her last 4 weeks. 

There were so many moments of magic that happened in this last month.  I was constantly amazed by the expert knowledge that the nurses showed and how they knew when to escalate medication. I had read about the use of a morphine driver and anticipatory medicines and was able to ask for this and understand how Mum’s condition was worsening.

In Mum’s last week she 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.

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 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. Her last moments were so incredibly peaceful and I would not have changed a moment of that passing. When I looked away, in silence, she took her last breath. I had felt fear at the thought of watching her die,  but I went to hold her cold, swollen hand once more, listened for a breath, watched for some movement and just smiled. Not with joy of course, or even relief, but a spontaneous smile which knew she was at peace. 

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. This room had become my home for 4 weeks and I wasn’t ready to leave either. I sat with Mum, her favourite music playing once more and sobbed, raw, agonising tears.