Denise’s story

My mum, Bertha, spent her whole life looking after other people. She cared for her family, including her siblings, from the age of 11 due to her mother’s ill health. Later in life, she cared for my dad, who passed away from dementia 20 years ago, and helped take care of my children while I was working as a nurse. Mum was always so kind, and she was my go-to person whenever I needed help.

Getting a diagnosis

I first noticed changes in Mum’s behaviour in 2014. She started to make accusations that someone had broken into her home and damaged her property. I asked to see the evidence and she said that she had cleaned it all up. It didn’t quite add up. Mum was in her 90s at this point, so I initially thought it was just cognitive decline.

Mum then started to have episodes of delirium and was taken to hospital. Nothing was found, but she was admitted to a care home until she was stable, which was her worst nightmare. We were able to get her home, but she was re-admitted a couple of times in the following few years.

I took Mum to the GP in August 2017, and she was finally diagnosed with Alzheimer’s disease – it had taken three years to get to that point. She was prescribed some medication to slow the progression of the disease, but it had the opposite effect and her condition deteriorated rapidly.

Denise's mum, Bertha

Denise mum, Bertha, at Denise’s wedding

Calling the Admiral Nurse Helpline

The few months after Mum’s diagnosis were awful. I got to the point where I just couldn’t cope anymore. The feeling of helplessness was overwhelming. I didn’t know what to do or where to turn. My health started to deteriorate. I couldn’t sleep, I was always tearful, and I didn’t feel like I could talk to anybody.

I called the Admiral Nurse Dementia Helpline and broke down. I shared all my worries and for the first time, I felt listened to and understood. It was such a relief. The nurse talked to me like a human being and spoke to me on my level, taking my nursing background into account.

Meeting my Admiral Nurse, Deborah

Following the call, I was put in touch with Deborah, an Admiral Nurse in my area. Deborah visited me at home, and we just sat and talked. She took time to understand our background and family history. She wasn’t just a support for me and Mum – she was a support for the whole family.

When you care for someone with dementia, it’s so easy to get hung up on constantly doubting yourself and questioning if you are doing the right thing. Deborah reassured me that I was doing a good job and that what I was going through was normal. She helped me to shift my perspective by reminding me that dementia is so much more than just memory loss, and it was dementia that was causing the changes in Mum’s personality.

Deborah helped me on both a practical and emotional level, and encouraged me to take care of my own mental health. She had so much specialist knowledge about dementia and was able to recommend local support services. Mum would sometimes leave the house on her own and get lost. Deborah suggested that Mum wear a scannable badge so that the emergency services could return her home safely. I wouldn’t have known about any of this without her.

Denise's mum, Bertha, celebrating her birthday

Bertha celebrating her 100th birthday

Moving Mum to a care home

When Mum had a nasty fall and ended up in hospital, the doctor suggested that we move her to a care home. I knew it was the right decision to keep her safe. Deobrah supported me and helped me throughout the process of moving Mum to the care home. She was a great emotional support to me too.

Mum celebrated her 100th birthday in the care home. They held a tea party for her and one of the carers put together a scrapbook, which was lovely. Soon after, Mum’s health started to deteriorate further, so I got back in touch with Deborah. Knowing that she was there at the end of the phone, and that she understood what I was going through was invaluable.

Saying goodbye to Mum

Mum passed away in January 2021 during the Covid-19 pandemic. We could only have a small number of people at the funeral so I asked everyone to send me their favourite memories of Mum and live-streamed the service. I laid Mum to rest in the family grave, so she could be back with her own mum and dad. Deborah supported me and gave me the details of a bereavement counsellor.

When my daughter also got married later that year, she had my mum’s engagement ring sewn into her wedding dress. It was sad that Mum couldn’t be there, but she was there in spirit.

Volunteering

Caring for my Mum was the hardest thing I’ve ever had to do, but Deborah made that journey easier. Without her, I wouldn’t have been able to cope. I am so grateful for the support I received and want to give something back by volunteering, so I have become a Volunteer Ambassador for Dementia UK. I regularly attend events to raise awareness of Admiral Nurses, handing out leaflets and talking to people about their experiences of dementia. Sometimes, all you need is someone to understand what you are going through and to empathise. I always tell people how Admiral Nurses can support the whole family and encourage them to call the Helpline. If I can help even just one person, it will be worth it for me.

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