Dementia and the end of life.

This is our story…

My first experience of dementia was when my great uncle came to stay in the early 1970s. 

He had left his family in Scotland to visit his sister (my Grannie) in the Midlands for a few days. She was a widow by then. She lived close to us and did not see her brother very often. He was travelling without his wife, who had chosen to remain at home. 

A few days into his visit, it became clear things were not going well. My Grannie said he had begun to act strangely. He accused her of stealing his things and talked about people in the house who were not there. She found it overwhelming and asked if he could come to us instead for the remainder of his stay.

He moved into our spare room pretty quickly, I think under the guise of being able to spend a bit of time with us before he left. He seemed to settle in well. However, when my mum was out collecting me from school one day, he took it upon himself to move all the furniture out of the spare room. He lined everything up neatly on the landing; no mean feat considering his age and the fact that it included a double bed, chest of drawers and a wardrobe. 

His visions continued, he experienced  mood swings and he would often disappear for a ‘walk’. He could be gone for hours and, in the days before mobile phones, I remember the police being called to find him.

It was at this point that mum realised something was not right and contacted his wife. It transpired she, too, had been struggling with his erratic behaviour and, not sure what to do, decided a trip away might be what he needed. 

The situation had been hard for her to deal with alone; she had not known who to talk to about it and did not feel able to broach the subject with my great uncle either. My mum suggested he was seen by our local GP and luckily my great uncle agreed. Eventually he was diagnosed with dementia.

Looking back, what strikes me most about this experience was my mum’s ability to calmly manage my great uncle, navigate his moods, communicate with his family and all the while talk openly to us about what was happening. In a way, she set the template for our own future. Four years ago, she, too, was diagnosed with dementia. 

In the beginning, she was keen to know all she could about Alzheimer’s and shared her story with everyone. I recall a taxi driver being quite flustered by mum’s full explanation of why she needed a brain scan as we headed to the hospital together for an appointment, but this kind of frankness often opened up conversations.

 Mum was determined to reduce the stigma around dementia, and I am sure this was in part due to our experiences with my great uncle and his wife. We now talk about everything; what kind of medication she might have, what things she is finding difficult to do, her frustrations, what she enjoys, where she might live in the future, and crucially, her wishes around her own death. 

Taking Mum on a Dementia Adventure holiday on The Isle of Wight. 2018

 Although her condition has deteriorated since her diagnosis, in the moment, she still has capacity and is able to express her thoughts. It is helpful because we know what she wants. The fact that we are able to talk now before things progress further is invaluable. 

Death can be seen as a difficult conversation to have and has been quite taboo in our society. But discussing this early can take away a lot of the fear and worry. It allows us to ask the right questions of health professionals and makes everyone feel empowered and confident in making the decisions we need to, along the way. 

 Penny Bell