Gaynor Lowe - Clinical Governance and Quality Coordinator, Integrated Urgent Care

My mum passed away in October 2018 after almost a year in a care home. She was 87-years-old. My mum was my rock, my safe haven, the person I could tell anything to and we had wonderful conversations about everything under the sun.

 My mum started to have lapses in her memory in probably 2011-12, although she lived independently and would zoom about on her motability scooter. She became ill with a burst ulcer and had a serious operation to fix this but following her stay in hospital the lapses in her memory increased and her confidence dwindled. I took on more of her jobs like shopping and cleaning; we got into a different routine.

In 2017 her neighbour found her in bed and she was in a serious state, her bowel was blocked and she was rushed into hospital for yet another serious operation. She was in St James’ Hospital for a couple of months and then discharged home. Her dementia had deteriorated to the extent that she didn’t know if it was morning or night, she was taking her medications incorrectly, not eating and her conversation was nil to be honest. She had another lapse and was taken back into hospital. She knew she would have to go from there into care.

They then found that she had cancer in her oesophagus and abdomen but being the age she was decided not to treat this and keep her as comfortable as they could.

From that time I became the parent, my rationale conversation with my mum was gone. She moved into a care home and I visited her every single day. She wouldn’t eat if I wasn’t there, she would shout my name all day wondering where I was, she wouldn’t take her medications. She had recurrent chest infections and urine infections. She hated the home, she would become really nasty and say horrible things to me on occasion. She lost interest in reading, television, talking to people. I was having to make decisions I didn’t want to make. My safe haven was gone and I was now that for her.

On visits when she was talking rationally, which were rare, I wanted it to go on forever and I would stay trying to keep the conversation going as best I could to keep her “normal”.

She would ask when her mum and dad were going to visit her, where her brother was and I didn’t know whether to tell her the truth and see her get upset or lie and tell her they were coming later.

The saving grace of all this is that she never forgot who I was, well only once. She sometimes thought I was still her little girl and had to go to school.

On Wednesday 3 October 2018 I was telephoned at work to say I needed to go to the care home as mum had deteriorated. She was placed on anticipatory medication and never regained consciousness, passing away in the early hours of Saturday 6 October. I never left her side from the Wednesday. I played her favourite music in the room and told her she could go and she did.

There is so much more I could say, but time is precious. All I will say is that dementia stole my mum from me, it broke my heart and gave me guilt that I will carry for the rest of my life. It split my family as I no longer speak to my sisters and I do not think there is enough help and advice for people who are carers.

Gaynor's mum in her late 20s

Gaynor's mum in her late 40s

Gaynor's mum in her 80s

Gaynor's mum in her late 80s in the care home