In this blog, Julia talks about how being a carer for her mother affected different aspects of her life.

My mother’s vascular dementia came on suddenly following a series of ministrokes in late 2015. Mum became disorientated, anxious and distressed. I spent an increasing amount of time living near or with mum to try and support her. Four years later my mum is still suffering, and I am back home trying to save my marriage. So how did I get here and how did my caring role affect me?

From living independently to needing 24-hour care

It started one morning four years ago, when my mother woke up and didn’t recognise the house she had lived in for 20 years. She lived alone, though I was staying with her at the time. I was also with her several days earlier when she had a ministroke. We were in Porthcawl at the time, to spot Elvis lookalikes, at the annual Elvis Presley festival. I describe what happened in a letter I wrote to mum.

Mum was admitted to hospital, and six weeks later was diagnosed with vascular dementia. She had lost her sense of where she was in time and space. This meant she would need 24-hour care. Her next move was to a care home.

From the start, mum was terrified about being on her own in her new surroundings first in the hospital and then in the care home. The terror hasn’t subsided in the four years since. Amongst now familiar faces she is often lonely and scared. She asks for Haydn her husband, her children or her parents depending on what period of her life she thinks she’s in. She often feels abandoned. Her self-esteem, never very high, has plunged new depths. Mum talks of wanting to kill herself.

My efforts to improve mum’s dementia care

From the time mum was in hospital and dementia was suspected, I read up about dementia care, and attended courses to learn how to alleviate mum’s distress. I worked with care staff in the new home to put into practice a personalised care plan. I visited as often as I possibly could which meant spending increasing amounts of my time in Porthcawl, South Wales, a long way from my home in Brighton. My husband, Jack, was a constant support. I worked remotely so it didn’t matter where in the world I was living.

Mum’s distress impacts on my health

Nothing worked. Things didn’t get better for mum. Juggling the care of my mother with my job, which involved lots international travel, had become a strain. I became seriously ill three times. Twice I got sepsis and was hospitalised. When I lost my job one and half years later, Jack and I agreed I could use the time to focus more on mum.

After two and a half years mum was still unbearably distressed, and things weren’t improving. I had hoped to be returning home by that time. Instead, I decided to bring mum back to her home and care for her there for a year. This would mean more time away from my home and Jack.

Bringing mum home

I had a challenging and isolating time with mum at home, but I got lots of support from the local council. There were many joyful times too, and I have special memories of my precious time with mum. I felt I was giving her a last shot at freedom and of receiving genuine personalised care. After the year was up, I hoped to settle mum in a better care home more suited to her needs with an improved care plan.  

In August this year I moved mum into a new care home, and I moved back to Brighton. Although I considered carefully the choice of care home, she’s not got on well there. Mum has had two falls and there aren’t enough staff to adequately engage her. She is currently in a dementia specialist hospital ward where doctors are trying different medications to lessen her emotional pain. Her new care home won’t take her back unless, and until she’s more “manageable”.

So how has my caring role affected me?

Mum is still clearly very unhappy, which breaks my heart. The separation from Jack put a strain on our marriage, one that wasn’t there before. Now that I’m home, I hope we will find a way through these difficult times together.