Russell's story - "My message to anyone living with dementia is to talk about it"

I met Carol when she was working as a nurse in the Royal Free Hospital in London. I was a trainee detective investigating a case, and as they say, the rest was history! We went on to have three children and were married for 56 years.  

It felt like whatever I did was wrong  

I first noticed that Carol’s personality began to change in 2021. She became aggressive, which was distressing for both me and our children. It really hurts to see the person you love not being themselves anymore. I was very concerned and wrote a letter to our GP as Carol wouldn’t book an appointment. Carol was referred to the memory clinic, but she wouldn’t let me attend with her. Following the appointment, Carol was diagnosed with mild cognitive impairment.  

Over the next couple of years, the downward spiral was gathering pace. Carol’s behaviour was becoming more challenging and distressing. There were numerous incidents where Carol would walk out of the house at 6am, even though she wasn’t a morning person. I even had to call the police to report her missing. Thankfully they found her eventually and brought her home.  

Carol’s personality took a real turn, and she would verbally abuse me. It felt like whatever I did was wrong. She complained about everything from my cooking to the way I stacked the dishwasher. She even threatened to kill me in my sleep.  

I was able to pour my heart out to my Admiral Nurse, Katie 

Like most people, I turned to Google and that’s how I came across Dementia UK. After one particularly challenging day I called Dementia UK’s Helpline for some much-needed guidance. Carol’s verbal abuse towards me had taken a toll.  

It was such a relief to speak to somebody who understood what I was going through. The dementia specialist Admiral Nurse really listened to me and reassured me that I wasn’t doing anything wrong, that Carol’s behaviour was just part of the disease, and that I was doing everything I could to care for her.  

Later down the line I booked a virtual clinic appointment which was also great. The best thing to come from the appointment was that I was referred to the local Admiral Nurse, Katie. Carol refused to meet with Katie or to allow her into our flat, so I had regular meetings with her in a local coffee shop. I was able to pour my heart out and Katie always had sound advice.  

The best advice Katie gave me was to just ‘go with it’. She said not to challenge or oppose Carol as it just exacerbated the situation. It was far better to just agree with her. Even if I knew the dishwasher was stacked perfectly, was it really a big deal if she disagreed? This advice helped enormously.  

We recaptured our long-lost love 

One evening, Carol was in a lot of pain, and we decided to take a trip to A&E. She had a scan which revealed she had ovarian cancer – another problem to add to the mix.  

Carol got progressively weaker and ended up going into a hospice. But the cancer seemed to temporarily beat the dementia away and the Carol who I had known for many years returned. We could sit and chat like we used to, and ‘Mrs Nasty’ was gone. We were able to recapture our long-lost love.   

Carol died four weeks after her cancer diagnosis. It might sound callous, but her death came as a welcome release. I felt four weeks to death was better than a slow decline of four years.  

Once Carol died, I assumed that I wouldn’t be able to see Katie anymore. But she continued to support me throughout my initial grieving period until I was in a better place. 

I’ve decided to leave a gift in my Will to Dementia UK

Without Katie and the Helpline, my journey through these most challenging times would have been intolerable. I am so grateful to Katie that I have decided to leave a gift in my Will to Dementia UK. I couldn’t have got through this journey without her. 

My message to anyone living with dementia is to talk about it and share it with someone. Don’t think you can handle it alone; share it with Dementia UK and an Admiral Nurse. You’ll never regret it.