Real stories

‘Mum had dementia and received fantastic care. Why isn't it the same for everyone?’ - Julia's story

When I think of my mum, I think of the bubbly, caring lady she was. Dressing up as a clown outside the charity shop where she worked, making jokes – even when you didn’t quite know it was a joke. Never missing a family holiday or the opportunity to have fish and chips with her grandchildren.

After a severe stroke, which took her into hospital, Mum started to go downhill physically. Four years later, after experiencing another stroke, she was diagnosed with vascular dementia.

‘Over the next few years, Mum's decline was gradual, but her memory of us as a family and who she was remained.’

As we adjusted to the physical and cognitive effects of the stroke and dementia, alongside her scoliosis and arthritis, social services helped in every way they could. They arranged a grant to turn her bathroom into a wet room, sourced devices such as flashing alarms and phones, and altered her chair to suit her best.

We attended sessions arranged by the local authority ‘Managing Memory Together’ team. They helped us better understand the behaviour changes we may see in Mum and connect with others in similar situations. 

‘These sessions made me aware of just how lucky we were. It disappoints me so much that many people who need care do not have the options and support we did.’

The local authority provided fantastic personal care for Mum, giving her meals, helping her to go about day-to-day tasks and stay safe in her home. But what was missing was social care – allowing mum to enjoy the rest of the day and carry on doing the things she loved.

When Mum met Chrissy

Mum's need for friendship, and time to talk, is how, and why, she met Chrissy. A companion to Mum, Chrissy was a friend of a friend who had been struggling in a the same situation.

Chrissy was and still is the warmest person. She would sit with Mum for a couple of hours a week, soon turning into 5 days a week, and slowly began helping with needs around the house. Every day she would come in and give Mum a hug – just like she was family. 

I often joked ‘I think she loves you more than me!’ - a testament to their closeness.

Chrissy got to know Mum, but she also knew how dementia affected her. She taught me how best to communicate with Mum. Kneeling on her level, maintaining eye contact and giving her time to respond. She cared for Mum by understanding who she was, her needs and connecting with us as a family and her community.

All this seemed to come naturally to Chrissy, but the care system should not assume that carers understand the complex nature of dementia. All carers should be trained to understand and care for people with dementia.

With Chrissy’s help, and the help of local authority visits, our life could carry on. While Mum’s care was always at the forefront of my mind, life was a little easier than it is for so many in our situation.

I was able to keep living my life knowing she was safe, and as could my family.

Mum was admitted to hospital

One evening, Mum rang me in a panic. She said she felt dreadful, and her breathing was light.

After reaching out to paramedics she was admitted into hospital, where doctors told us she was in her last days. Mum sadly passed away several days later at home.

While her visit to hospital was brief, her final few days stuck with me. The nurses and doctors seemed to have no understanding of her needs as a patient with dementia. One day we found her severely dehydrated and constantly desperate for the toilet – things she had not been able to communicate, but which should have been spotted. They fitted a catheter, but she didn’t understand.

While the doctors were sympathetic to our situation, the lack of understanding was awful. It made clear to me the difference between the good quality care we had experienced, and how, without the appropriate training, care could be so poor for someone living with dementia.

Yet, while Mum’s experience in care had its highs and lows, our story is one of hope.

Seeing both sides of the care system

In her final three years, I saw my mum experience the very best care, but also where it can fall down. I have seen both sides and know what a difference the right care and support can make. Not just to people with dementia, but their loved ones too. 

I have so much compassion and empathy for those people who spend each day desperately trying to get support and answers on how to access good quality care for their loved ones, and that is why I am calling on Government to act.

For Mum, support and personalised care, allowed her to retain her independence and spend time doing what she loved – socialising and talking with a cup of tea. While for me, I was able to spend time with her and my own family as a daughter and a mother, not solely a carer.

There is no reason why it shouldn’t be this way for everyone who relies on social care. 

I know that we can have a care system which is accessible and personalised. I have witnessed it and lived it. But without action from Government, good quality care will remain a postcode lottery.

I am sharing my story as it doesn’t have to be this way, there is hope – our family should not be the anomaly. Because while dementia isn’t curable yet, the care system is.