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John Ellis, a much loved member of our community, sadly passed away earlier this year and his daughter Tessa has written a lovely piece talking about how dementia affected him and his family, but also how the Halesworth Dementia Carers fund were able to help them when they needed us the most.

My Father’s Dementia Story

By his daughter Tessa Summers

 My father, John Ellis was officially diagnosed in November 2023 with mixed Dementia and Alzheimer but as many of us know the warning signs started much earlier.  My husband and I came home from living abroad in 2013 so he lived next door to us for many years.

In my dad’s case the dementia was gradual.  Apart from being a little forgetful at first, he managed well but there were a few incidences.  A keen golfer he decided to dry his golf shoes in the microwave – which I hasten to add is not a good idea.  The rubber soled shoes melted!  On the plus side they did not have metal spikes and at least the smoke detectors were working!  He rubbed shower gel directly onto his face because it said on the label ‘moisturising for the skin’.  Keys, glasses and wallets were getting mislaid on a daily basis.  It was always someone else who had moved them apparently.  One time (thanks to an apple air tag) I found my dad’s wallet in the freezer.  One morning I saw him climb out the bedroom window because he had locked all the doors overnight and couldn’t find the keys – quite agile for someone in their 90s and luckily his house was single storey!  Scammers and con artists, mostly over the telephone but sometimes the computer, were also a constant threat.

His sleep patterns got worse, going to bed earlier and earlier and getting up earlier and earlier – sometimes so early it was before we had even gone to bed at night!  He would get dressed, pack a suitcase – sometimes all trousers and nothing else, sometimes with food and a knife and fork and sometimes just shirts and framed photographs – incidentally never any underwear.  Often he would come into our house in the middle of the night or walk past our kitchen door and set the dog off barking.  One morning at around 4.30am the dog was barking louder than normal so my husband got up and looked out the window and said “there’s a police car outside”.  I said “ha ha pull the other one” but then he said “no there really is”!  I jumped out of bed and went next door.  My dad had flagged the police car down wanting a lift to the airport to fly back to England.  From the police records (an out of date shotgun licence) they thought he lived 3/4 a mile away so tried to drop him off there only to find out he didn’t live there so brought him back to the end of our drive where they had picked him up and to his house! Who knew that the Suffolk police were so active at 4 in the morning!

On another occasion he told me he had qualified for the Semi Finals of the World Snooker Championships (which was on tv at the time).  I had never seen my father play snooker ever so said “oh stop joking dad” to which he got a little cross and said “I am serious”.  So going along with it I told him not to worry and that I would telephone to tell them he couldn’t get to Sheffield tomorrow so would like to withdraw.  Another time he wanted help with the cufflinks on his smart dress shirt to which I said “Oh dad why are you wearing that”?  To which he replied I need to stand in at the presentation for that man pointing to the TV.  He was watching Wimbledon.  After the snooker episode I said “Are you playing tennis then” to which he replied “Oh don’t be so silly – I just need to stand in for that man with the black hair”.  You mean Alcaraz who is 21?  He said yes I am going to dye my hair!

It is always important to look on the funny side while looking after somebody with dementia.  Dad became quite well known on the local village Whatsapp towards the end.  Physically and particularly for his age he was incredible and would often wonder off without telling me.  Sometimes to Wissett Church (about a mile away) sometimes as far as Halesworth (3 miles away), getting lifts off concerned drivers.  He told them he had important documents to sign in Town!  People were very kind and often invited him in for coffee.  One such time was when he was looking for accommodation for the British Army near Chediston Church.  The kind but concerned couple still smile when they think of my dad and that their cosy cottage was suitable for Officer billeting

Dementia is a cruel disease.  My clever, successful self-made business man father would not have liked the fact that he needed help putting on his clothes the right way around.  He would answer the telephone with the TV remote and yes - try to turn on the TV with the telephone!  Before dementia he was the one who had helped me and both my brothers with practical and financial advice.  He was always there for us.  A cool head in a crisis with unconditional love.  

I am pleased to say that right to the end he still had a good sense of humour and an amazing quality of life thanks to Halesworth Dementia Carers.  His diary was busy with Memory Café Tuesdays, Singing with Friends Wednesdays, Creative Art on Thursdays but above all HDCF offered warmth and friendship and a feeling of belonging. 

Earlier this year I attended a course/workshop with dad which was funded by Halesworth Dementia Carers Fund and held at the Pear Tree Centre.  It was called Remembering Yesterday Caring Today. On the final Saturday they asked the Carers to write a living testament to their husband, wife, mother or in my case father about how much they meant to them. Dad died on 27^th March 2025 and I am very grateful now that I got this opportunity to tell him how loved he was and how lucky was I to have him as my father.