Jay's mum Nicola was a Hospice in the Weald patient. Here Jay explains how Hospice in the Weald ensured Nicola reclaimed some peace and dignity in her final days and provided 'a strong and caring place' of support for her and her sister
Our journey with the Hospice began years ago. Mum’s district nurse Maggie had come to know us during her weekly visits following mums diagnosis of Multiple System Atrophy and seen for herself how wonderfully creative and resourceful she was, and how frustrating it was becoming now that the disease was slowly taking away her ability to sew and use her hands. Maggie told us that the Hospice had a Day Service for people with life similar illnesses like mums and they offered a whole range of support, including creative projects.
I think mum was instantly keen - but it scared me – wasn’t the Hospice only somewhere to die? The first day I dropped her off at the Hospice Day Service, it was clear my fears had been entirely misplaced; she held onto my arm for support and we walked into a light, airy room. There was lots of laughter and people buzzing around, nothing like the images I had conjured up in my mind. A smiley, petite lady, (who became a very supportive friend and nursed mum at her bedside in her final days) came over and spoke straight to mum, complementing her on her red jacket – my mum had quite a keen eye for fashion so they struck up an instant bond. She liked to shop my mum, and became extremely well known for it by the staff and volunteers – she would quite often be showing off new boots or her latest charm on her bracelet. They really took time to know my mum and see the wonderful person she was beneath the illness.
She seemed extraordinarily content – and although she never told me this herself, I think that ironically, her visits to the Hospice allowed her to forget she was so ill. At home we fussed, we fluffed up her pillows, asked her if she was ok too often, tried to get her to eat at every opportunity and rest, rest, rest.
Her trips to the Hospice Day Service were filled – in just a few hours she would do so much. The resident artist fully encouraged her not give up her arts. Her right hand was becoming more stiff and unresponsive, but he helped her see this as an opportunity and she tried painting with her left hand instead. We framed her first beautiful painting of an autumn leaf and put it up in the hallway – it was one of many masterpieces to come - capturing moments of the world she saw around her then. I treasure everything she made now – it’s as if the artwork encompasses the words she wanted to say; the last things she wanted to express before leaving us.
When she became worse, my sister and I struggled at home. Even though my sister was a capable nurse, she crumbled. One day I found her in the bathroom crying and angry, the catheter was blocked again and mum was in so much pain. The drugs didn’t seem to be working and there was nothing we could do to make it better. We felt we had nobody to turn to but the Hospice. They told us that there was a spare bed for mum and that she could go there for a week or two to regulate the medication. Hearing this was the biggest relief; it was like we could breathe again – all of us.
No longer distracted by the pain that we struggled to control at home, she was cocooned in a place she felt safe and secure. Even though her life was ebbing away then, my fondest memories are of those times. Looking back I realise it was because the pressure had been lifted from my sister and I – we could just sit in her room and make the time together really count.
Mum developed pneumonia and was admitted to a hospital, leaving her at the end of visiting hours was like being wrenched from a terrified child. Although her basic physical needs were addressed the total lack of compassion and communication were so upsetting and I had nightmare after nightmare that she would die there, lost and afraid
When we were told by the doctors that no other medicine could cure the pneumonia, all I could think of was getting mum out of the hospital and to the place she knew and had grown to love, Hospice in the Weald. When I got the news that the Hospice had a bed and that she would be moved there that day – I cried with relief. I went with her in the transport ambulance and when she opened her eyes I said reassuringly “you are going to the Hospice mum, you’re going to be ok” and she held my gaze a little longer and then she shut them, as if in relief that she could finally rest. That was the last time she ever looked at me.
In the last week of her life, the Hospice provided a temple for mum to rest and for our family to visit her. It wasn’t a fairy-tale ending; I didn’t sit by her bedside and watch as she slipped into a deep peaceful sleep. Whilst I was reassured by the doctors that she was in no pain, her breathing was laboured and rattling.
Lorna, a nurse that we had come to trust and like very much, sat by me one of the evenings when I was outside mums room, too frightened to be next to her. I felt lost and desperate – I asked Lorna a thousand questions and was surprised that she didn’t give me any words of wisdom, she just looked back at me with sympathetic, tear filled eyes.
The call came after midnight. Mum waited until we had all left and gone home – thoughtful until the last. A nurse walking past her room stopped and entered because she had an intuition, she held mums hand until she took her last breath so that she didn’t die alone.
And so, as I come to terms with losing mum, I carry precious memories with me that were made at the Hospice – of mum laughing with the nurses and volunteers at the side of her bed, her sitting peacefully in the comfortable chair looking out onto the gardens.
I’m just so glad that despite it all, mum managed to reclaim some peace and dignity in her final days – and there was a strong and caring place for me and my sister to be, a safe haven amidst the storm we were fighting.