I've known Karen since 1998 when we started working in the same team. We had a lot in common, with children of a similar age and would talk about them occasionally, but it wasn't until the end of 2003 after her becoming a widow and me a divorcee, that we got together and were able to bring smiles back to both our faces.

I proposed to her in Machu Pichu in 2006, after walking the Inca Trail. She was taken aback but said yes and we married 2 years later in Cyprus, with our children around us.

We had many happy years together with holidays (Karen loved her cruises) and moving to a beautiful house in the countryside with views over fields to the Cotswold escarpment. Our children gave us 9 grandchildren that we both adore. We both retired in 2016, looking forward to many holidays and adventures and watching the grandchildren grow up.

Then, around 5 years ago, Karen started to show signs that all was not well. At first she complained of her leg and sought physio that didn't help. She developed a slight stoop too and was referred to Neurology who, in 2018, thought it was likely to be Parkinson's Disease. However, whilst the Parkinson's medicine did help, over the next 2 years she started to show other problems with mood swings, hallucinations and delusions that came to head the first Easter of Lockdown in 2020. Her diagnosis changed to Lewy Body Dementia and a raft of other medicines were prescribed together with a cutback in her Parkinson's medicine. It seems the two illnesses are related, being on opposite ends of a spectrum of symptoms. Whilst Parkinson's is not meant to be life shortening, Lewy Body Dementia certainly is, and reading about it I found out what to expect.

Alzheimer's is the most common and well known form of dementia, with Lewy Body second. Yet, I'd never heard of it, nor have many I've spoken to. Lewy Bodies are malformed proteins that accumulate in the brain and disrupt or kill the neurons. Where they form will dictate what symptoms will be experienced so everyone with this disease will show it differently. I read that death typically comes about 3-5 years after diagnosis (it's often misdiagnosed) following a gradual decline in cognitive ability (memory isn't so badly affected), mobility, and lastly bodily functions. All this while suffering the hallucinations and delusions which in themselves can be frightening.

Karen's loss of cognitive skills meant that she was no longer able to cook, do any housework or sort out her finances. I put my life on hold to be her carer (who wouldn't) and watched her declining very, very slowly, all the while having to answer her relentless questions about the delusions she was suffering: Why are there several of you all wearing the same uniform? Where is our house? Why would someone build a copy of our house? Those aren't my pictures on the walls, they're copies, where are mine? You're not Graham, where is he? I could go on...

Lockdowns permitting, we did have a couple of short breaks during the last 3 years with an enjoyable 4 day cruise to Amsterdam being the most recent accompanied by her daughters, Kirsty and Gemma.

For the last 3 months though, the rate of decline increased greatly. She had a fall in December that left her pretty much bedbound and after lots of help from family over Christmas, carers were brought in, starting on New Year's Day. Communicating with her was difficult and some of the time she would be screaming but unable to say why. She would fight and curse at the carers and family when we were attending to her and eventually, in February, the doctors thought she would be better off in hospital to see if changes to her medications would help.

She was there for 5 weeks and in that time soon lost the ability to even move her arms and legs. She would sleep or be awake, screaming much of the time, losing her strength and voice as the days went on. Then one day she stopped eating or drinking; she had lost the ability to swallow. 

Following a choking episode during the night when oxygen had to be given and I got called in, her children and I, along with her doctor, reluctantly agreed to "end of life" care. It was the hardest decision I've ever had to make, for sure. From that moment on either myself or one of her children were always by her side 24/7.

It was during this period that her 9th grandchild was born. Photographs were put around Karen's bedside and I hope she understood and took delight. I'm sure she was hanging on to see baby Olive.

Then, two days later, on Wednesday the 15th March at 21:05, she took her last breath with me, Kirsty and Gemma beside her. The torment was gone and the screaming had stopped.

Lewy Body Dementia is an awful illness to have and to watch a loved one with. It seems to be hiding under the radar but there is a charity devoted to funding research and raising awareness of it. I would like to raise money in Karen's memory to donate to this charity.  As well as vital research, they also hold Zoom sessions for both sufferers and carers that I have attended and benefited from at times. So, please give what you can to help stop others having to go through what Karen did.

Karen was a beautiful person who achieved so much in her life and raised 3 great children. She gave me so much happiness during our time together. I will miss her so much.

Thanks for taking the time to visit my JustGiving page.

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