talkdementia.uk

Dave and I were married when I was 18 and he was 33, going on to have four beautiful daughters and providing a home for our 

Godson Stuart when his mum died, enjoying a happy family life. Then, out of the blue, in December 2013, Dave had a massive psychotic episode, which left him with an A-Typical Vascular Dementia. Dave’s decline was rapid, by October 2014 he was in a Dementia nursing home with what was classed as Late Stage Dementia – his dementia robbed me of a husband I loved more than anyone could and our daughters and Stuart of a doting, wonderful father.

 

Caring for him through those years, battling to get a proper diagnosis, funding for his care and the right support was emotionally draining and physically tiring.  Having worked for a charity for over 20 years myself supporting families through a devastating diagnosis and making sure they got the right care and treatment.  I found myself now unable to advocate for Dave.  The system simply wouldn’t let me and I felt I had failed him. In the final few years I also had to deal with my mum’s cancer diagnosis, my dad also being diagnosed with Alzheimer’s, not to mention dealing with having my Thyroid removed because of a tumour. 

 

I opened Wellesbourne Dementia Café  in January 2016 with help from friends and volunteers. Our doors were open Wednesday afternoons, when we’d welcome anyone with dementia and their carers, provide  a cup of tea of coffee, friendship and laughter and someone to talk to.

 

When I saw Paul and Mary walk through our doors earlier this year, straight away I could see what state he was in. Another volunteer sat with Mary, while I took Paul to one side to help him open up about what he was going through. Like so many others who came to see us, Paul left two hours later having shared so much of the pain he’d been enduring alone for countless months. With our leaflet in his pocket – and my mobile number at the top – I told him he could call or text any time and we’d be there.

 

Having taken Paul’s contacts, I texted him a few days later to check in on him, and got the impression that he was clearly still struggling. Mary had gone into respite care – a home with 24-7 support – and Paul was in pieces. He called one afternoon in floods of tears, so I sat and listened and provided answers where I could.

 

Knowing I had to be proactive in my support, I started sending smiley emojis every morning and evening, checking in on him so he didn’t feel alone. When he was having a particularly bad time I’d send the acronym AWCM – always wear comfortable pants - a tip I’d picked up from other carer supporters. I knew it made him laugh, so I’d then send an emoji of Y-fronts, then when I got to know him a little better, I’d send emoji for walking, wine and musical notes for his jazz, which he loved.

 

I knew Mary was the love of his life – like Dave had been to me – and seeing her go ripped his heart out. One Saturday night he texted me to say he was in a bad way, but not to call. I called him straight away and he was in floods of tears. Mary had passed away a few days earlier, and he’d called the Samaritans. I’d done the right thing, and I just let him spill out all his emotions on me.

 

I’d normally have said we should meet at the Dementia café, but during lockdown that obviously wasn’t possible, so I said he should come to my house for a cup of tea. The more we talked, the more I realised how much we had in common, anything romantic was the absolute last thing on my mind - but that's another story...