Steve's story: "I found it difficult to reach out for help”

Mum was diagnosed with Alzheimer’s disease at the age of 77. The first sign was memory loss, and as her condition progressed, her sleep patterns became erratic and she really needed routine. She was always such a polite person, but she became easily frustrated.   

I found it difficult to reach out for help

It was hard to see Mum’s decline. Following a particularly bad fall, she was hospitalised, which was very traumatic. It was during the Covid-19 pandemic so we couldn’t visit her, and she couldn’t understand why. 

I initially found it difficult to reach out for support. I think sometimes as men, we are not so good at asking for help when we need it. I personally found it difficult expressing myself during such an emotional situation and felt like I should be able to manage it myself.   

I became very worried about Mum’s worsening condition, particularly her mobility and her ability to continue to live at home. I was also worried about Dad’s wellbeing as her sole carer. It was clearly becoming a lot for him to take on and it was having a visible impact on him. But he didn’t want to seek help and wanted to handle it himself. He loved my mum very much and I think he felt a sense of duty and wanted to be the one to look after her. 

I was losing bits of Mum every day 

I felt desperate – and that’s when I called the Dementia UK Helpline and spoke to Joe, a dementia specialist Admiral Nurse. Mum’s dementia had felt like a long mourning process – I was losing bits of her every day. It was so helpful to talk to someone who understood what I was going through.  

I knew it wasn’t practical for Mum to live at home anymore, but I didn’t know anything about care homes. Joe told me everything I needed to consider when looking for a care home, including information on how we might fund Mum’s care. He also put me in touch with the local Admiral Nurse service.   

I found speaking to Joe very valuable. I called him many times. He was so understanding and there was a level of male-to-male empathy which I found very reassuring. I remember crying down the phone and I don’t cry often.   

Dementia is a family experience 

Sadly, after six weeks in hospital, Mum deteriorated rapidly. We all knew the end was coming, but we had to be fully masked up to be with her, and we could only see her for 30 minutes. It was a very sad ending for someone who had made such a contribution to other people’s lives. 

I wanted to do something in Mum’s memory, so I set up a MuchLoved online remembrance page so people could donate to Dementia UK, and over the years, people have continued to donate generously. I have now raised over £10,000, and I’m keen to keep raising more.  

Dementia is a family experience, but all the interactions with the GP were between Mum and Dad, not the wider family, so it was extremely helpful for me to speak to Joe. I was then able to pass on his advice to my dad and siblings.  

At a time of extreme stress, Joe provided us with comfort and guidance. I feel indebted to him for his support at our time of need. I can’t thank him enough.