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Julia and Gladys at home together

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

Julia’s mum, Gladys, lived with vascular dementia. She was a bubbly, social woman and her care replicated that. The support Gladys received was exceptional, and now Julia would like to help families, not as lucky as her own, to receive the same.

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.

A close up of Julia and Gladys smiling

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.

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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.

Julia and Gladys by the sea

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.

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6 comments

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It is disgraceful that the government has yet again kicked the can down the road. They must fix social care. Your stories and mine show how unfair the system is and how much can fall on the family carers, often needing support themselves. I was lucky I could find excellent private care for my mother who had Alzheimer's but at a huge cost over several years. I gave up full time work and joined the care team and my own health deteriorated. I would do it all again of course but reading Julia and Glady's lovely story shows that it's time to find a fairer way to manage this and at the same time increase training for everyone, families and professionals. For example, there should be an Admiral nurse in all hospitals.

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Hi my name is Linda i have my dad in a care home, he is left most of the day with no one to talk to stuck in his room he has dementia .He has stopped eating now and hardley drinks i go every day and when i leave i dont think he has much human contact, i have had to put complaint in about care home he was dirty and he was cold sitting in a chair by the window he is 93 and is so thin he feels the cold, i think staff need training to give care and compasion dignity

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This is an absolute dis race and so very sad for you to have to view your dad suffer like this I cannot believe there is such a degree of neglect out there but would also believe it because I had some very average nurses in my rehab hospital after my stroke at just 44 yrs old, I too wasn’t given enough opportunity to sit on the toilet instead given a bed pan mostly because the nurses didn’t want to waste time helping me with the hoist to be moved to the toilet when I asked it’s not good there needs to be a shake up of the system somewhere!!!

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AFTER 14 MONTHS AS THE SOLE CARER OF MY HUSBAND DURING THE PANDEMIC. I CAN TRULY SAY STANDARDS ACROSS THE COUNTRY ARE A POSTCODE LOTTERY.HE HAS ALZHEIMERS, C.O.P.D, PROSTRATE CANCER, CATARACTS WHICH CANT BE OPERATED ON BECAUSE HE DOESNT UNDERSTAND WHAT TO DO AFTER THE OPERATION, ALSO USES HEARING AIDS. ON TOP OF ALL THAT TRYING TO COPE AS A CARER HAS BEEN A NIGHTMARE WITH NO HELP AND THERE ARE MANY IN THIS SITUATION WHEN WILL THE GOVERNMENT WAKE UP AND HELP.

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Julia and Gladys story - It is definitely heart warming and gives a clear messsge of hope to everybody involved with a relative who suffers from dementia. This story is uplifting and shows the Government that people who suffer from dementia are real "people" too. Their needs matter; their feelings matter; their families matter. This story re-inforces the idea that if the care system is good and families are directed in the right way, that a person with dementia's life is still rewarding, happy, purposeful, made easier by a clearly attainable system to allow families to live life and be loved not just exist.

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I totally agree that social care needs fixing, there is no reason why it shouldn't be fixed apart from successive governments throwing it into the long grass, they don't realise that long grass gets longer and then gets forgotten. I care for my wife who 2as diagnosed with Alzheimers nearly six years ago and as regards to help I get none. My wife has some savings which in actual fact was my redundancy payment and we have to spend most of that before we may get some help, this is just not fair, no one should have to spend what little money they have to get some good care. I have a lady come in tree or four times a week to give a break which I have to pay for, her name Julie and I dont know what I would do without her, my wifebis 86 yrs and I am 84 yrs and it is killing me.

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