Talk Dementia / Tysoe Warwickshire / Dementia Carer Support

Heather's Story...

Written during 2020

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, 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...

Paul's Story...

Never give up hope

Written during 2020

Mary was 10 years older than me, and the most gorgeous, caring, amazing woman I’d ever met. She was a practicing Solicitor, extremely intelligent and spent her life helping others especially the elderly. We were to be married within 10 months of meeting. About six years ago I started to notice some changes. For someone so full of love for life, Mary’s actions became completely out of character and she was clearly agitated, confused and frightened all of the time. Mary suffered Early-Onset Alzheimers and the health decline was very rapid, not particularly memory related as perhaps is stereo-typical, but more a fundamental change in who she was. It was incredibly disturbing to witness.

I first met Heather when I arrived with my wife Mary at the Dementia cafe.
it really was a momentous achievement to actually persuade Mary through the door and to say our life at that time was traumatic is perhaps an understatement. I didn’t realise then, but discovered later that Heather actually ran this cafe and had been responsible for setting it up following losing her beloved husband Dave after forty years.

Heather’s volunteers rallied straight to the rescue and engaged my Mary in conversation - Heather somewhat instinctively homed in on me as the Carer and we ended up talking in private for a good hour, which basically consisted of me rambling on in a state of distress whilst Heather listened compassionately.

I was only later to discover why she completely understood my feelings of helplessness and hopelessness.
I just felt that there was “no way out” of this nightmare someone had labelled “Dementia” and only later did I realise (and now know) that I was pretty much at the end of my ability to cope - I was on the verge of what is called "carer meltdown".

This was to be the one and only time that I was to take Mary to the Dementia Cafe, as shortly afterwards, again after much difficulty and soul-searching I arranged for Mary to have a one-week respite stay at a local Care Home. Whilst Mary was there, I decided to go down again to the cafe by myself. I just needed desperately to talk to someone about my feelings. Heather was busy helping other souls in distress and I ended up talking with one of Heather’s volunteers for a while until Heather once again made the time to sit and talk with me. After this encounter, as we were entering “Lockdown” and unable to meet face-to- face, Heather actually started texting me each evening and morning to make sure that I was “ok” - Heather did not even know me at this time but we ended up texting each other every single day.

My Mary came back from the first respite early, within in the first week, because the Care Home couldn’t cope with the situation, saying that Mary needed one-to-one care which they couldn't provide. A short time afterwards Mary went to another Care Home with a specialized Dementia Team and stayed there for just seven weeks and four days. Mary was my soul-mate and we had been completely inseparable for thirty years.

Although the last six years had been extremely difficult for both of us, I will always be so very grateful for those precious thirty years together.

My Mary was never to return to me though - It was Early on-set Alzheimers.

Heather continued to text me every day, we spoke on the phone and she listened to me at the lowest ebb of my life. After just seven weeks and four days my Mary was taken away from me. Heather was still there supporting me - She is an incredible human being and a truly inspirational woman.

I started to turn-up for a cup of strong tea (I had to educate Heather in the art of making proper tea). Heather and I started to talk and see each other more. I discovered, completely unexpectedly, that I had fallen in love and even more unbelievably that Heather felt the same way.

We are now a couple and I so look forward to spending the rest of my life in the company of this wonderful woman.

Heather and I regularly talk about Dave and Mary. This is really important for us.

When someone you love is that has been that important in your life, you will always be eternally grateful for the precious time that you spent with them.

We have both experienced extreme trauma, Heather even more than I. We have each deeply loved someone else for a major part of our lives and both know exactly what it feels like to care for someone that you love twenty-four hours a day, watching them suffer and then disappear.

Now on a joint mission to help others having to travel this seemingly impossible road - we are together.
We share so much life experience, discovered that we were born in the same year and we are even both left handed!

The irony being that the cruelty of Dementia has given us each other - Never, ever, give up hope...