Harjit's story - "We felt so isolated” 

“Mum had a strong Sikh faith” 

When Mum got arthritis she had to give up work, but she was still very active. She exercised every day, did all the housework and cooking and helped me look after my two sons. Her Sikh faith was also an important part of her life. She would get up at 4am to say her prayers.  

Four years ago, my parents visited India. When they arrived at the airport, Mum needed to go to the toilet and asked Dad to wait for her outside. After 20 minutes, Mum still wasn’t back. Dad asked a lady to check if she was still in the toilet but there was nobody there. 

Dad contacted the police. Four hours later, they found her walking around aimlessly by herself. She was oblivious about what had happened and said that Dad had moved, but he hadn’t. When we talked about it later, Mum denied it had even happened. That was the first sign that something wasn’t right.  

“Something was definitely wrong” 

Mum’s symptoms started to become more obvious. When she prayed, she would forget to turn the page. She kept losing her shoes when she went to the temple. One day she made a load of chapattis and when Dad asked who they were for, she said her parents – who had died many years before – were coming over. We knew something was definitely wrong.  

I called the GP four times, but Mum kept passing the memory test for dementia. They found that she had a urinary tract infection (UTI) which had caused delirium, but even when the infection had cleared, she was still behaving unusually. She even left the gas cooker on one day.  

I got back in touch with the GP and Mum was referred to their dementia team. She was finally diagnosed with Alzheimer’s disease in September 2022. Mum was 71 years old.  

“We felt so isolated” 

After the diagnosis, we were just left to figure it out for ourselves. I’m the oldest child, so I took on a lot of the responsibility of caring for Mum alongside Dad. It’s part of our culture: we look after our parents when they need us, just as they looked after us. I also created a rota system with my brother and sister, as they both worked full time. 

Dad and I were a team, but we felt so isolated. My husband was very understanding, but it put a strain on our marriage. We were like passing ships in the night. I didn’t get to see much of my sons either, and they were worried about me.  

One day, Mum attended a group for older Asian people for the first time – but when we went to collect her, she didn’t look right. She could barely walk. We took her to the hospital, thinking she might have had a stroke, but it turned out that her sodium levels had dropped to dangerous levels.  

The hospital ward was so busy, Mum couldn’t cope. She just lay in the fetal position with her fists clenched. When she was transferred to another hospital, the dementia consultant explained that Mum was having muscle spasms and might never walk again.  

“Nobody was listening to me” 

Harjit and her mum, Deesho, in hospital

Mum was discharged after three weeks in hospital but was readmitted one week later with bad bed sores. I asked the consultant if Mum was at the end of life, and they reassured us that she wasn’t. I knew my mum, and her eyes were telling me that she didn’t want to be here anymore. But nobody was listening to me.  

That’s when we were referred to the hospital’s amazing dementia specialist Admiral Nurse, Tina.  

Even before we met, just the thought of having an Admiral Nurse was a huge relief. And when Tina and I met at the hospital, I was able to sit with her and tell her all about our journey with dementia. She made me feel understood and a lot less alone. I couldn’t have asked for more.  

Tina also helped to ensure that Mum’s needs were met. She noticed that Mum was fiddling with the bed sheet, and she got her a special crochet blanket to play with instead. Mum loved it and wouldn’t let go of it; it helped calm her restlessness.  

Tina said I could call her whenever I needed to. It was so reassuring to know that support was there. 

“I promised Mum I’d look after our family” 

Mum was discharged from hospital again, but she was eating and drinking less than usual. A few days later, Dad called to tell me Mum had died. I screamed. When I got to the house, I just lay down with Mum. I didn’t believe it.  

Mum and I used to have tea together every afternoon at 3pm. I put her favourite teacup in the casket with her. I have my tea at a different time of day now, as I find it too difficult to keep that routine. I even struggle to look at photos of Mum.  

I  promised Mum that I would look after our family and take on her role when she was no longer here. When I’m making Dad’s dinner, I can hear her say, “Well done.” 

“There is a fear of seeking outside support” 

Losing Mum still doesn’t feel real; it’s like I’m telling someone else’s story. But more and more Punjabi people are developing dementia, and there’s a lack of understanding about dementia in our culture, so it’s important that I share our experience.  

A lot of people in our community think that memory loss is a normal part of ageing.

They also worry that support services might think they aren’t capable of caring for their loved one and will insist they move to a care home. This means these families are missing out on vital support. 

Mum was someone’s daughter, wife, sister, grandmother. But dementia doesn’t care who you are. The more we speak about dementia and normalise it within our community, the better.  

I recently started a petition to have Admiral Nurses in hospital and community settings. I already have over 2000 signatures. Admiral Nurses are a lifeline for families like mine and we need more of them.