'You can stand down now, Dad.' - John's dementia story

When John’s dad, Michael, was diagnosed with Alzheimer’s disease, it fell to him to provide the necessary care. With his training, John approached the delivery of care like a military operation – right to the end. 

My dad was born in 1934 in Suffolk – he left school at 14 and joined my grandad on the fishing boats in the North Sea. It was a very hard life, and from there, he went into the Royal Navy and served for 15 years. He became chief engineer, which he was so proud of.

I followed a pretty similar path, joining the Royal Marine Commandos. It was the hardest infantry course in the world, and I served for 10 years. 

 

   A man stands in military uniform    Father and son stand close in their formal military suits.

But then things started to fall apart when my mum fell ill, and I had to leave the Marines to help care for her. The whole experience with Mum meant that, when my dad was diagnosed, I felt prepared.  

Signs of dementia were already on the horizon

I first suspected dad had dementia when he couldn’t remember dates, but soon there were other signs something wasn’t right. He’d always been a good cook: “Let’s have some scran,” he’d say, and he would make us a slap-up meal. Then he lost his sense of timing and the meals went downhill until he couldn’t manage at all.

Dad never drank or smoked but he treated himself to cars! So when his driving became erratic, I had to tell him. He listened, he trusted me, and we agreed we’d go to the doctors.  

Dad took a memory test in 2017 which he failed completely – within about six weeks he was diagnosed with Alzheimer’s disease.

He couldn’t grasp the enormity of it. The consultant explained things to him, but the dementia didn’t faze him. I knew he couldn’t understand it, and in a way, that was almost easier and kinder. But it affected me.

People underestimate what carers go through

I felt for my dad, and I knew what was ahead. I knew I had to move in, and I could lose my job, but I couldn’t let him down.

At first, dad could still move around, but when he became immobile I needed help. Finding and funding good carers was hard, but my GP referred me to Alzheimer’s Society.

Honestly, meeting Sarra, our dementia adviser, transformed my life. It can be a lonely, stressful place looking after someone. But Sarra made life easier. Her professional and emotional support was worth its weight in gold.

A young woman with an Alzheimer's Society lanyard stands with her arm around an older man.

 

Dad didn’t want to go into a care home, and I was happy to look after him as long as he wasn’t in danger and social services were happy.

Providing care was like a military operation

I was regimented and organised, and it stood me in good stead as caring is tough. Then, during lockdown in 2020, my PTSD counselling stopped. I was devastated, and thought, “If I go under, I can’t look after my dad.”  

But Alzheimer’s Society cares for the carers too. Sarra helped me manage my stress, ease the loneliness and gave me practical advice to solve the problems I faced.

Eventually my dad stopped eating and drinking. I asked the doctor about it, understanding we were near the end. Back at home, I spoke to my dad and used a military term, “Dad, don’t fight any more. I am giving you the order to stand down.” I think he’d been waiting for me to say it.  

My dad passed away peacefully on 5th October 2023.

When you care for someone it’s a lonely place. You think you are on your own, but the Alzheimer’s Society backs you up. I still feel lonely sometimes, that’s just part of the grief. But the Society is always in my corner, and they’re always there. 

Our trained dementia adviser are here for you. Support us in helping more people who are currently, or who will one day be caring for a loved one. Thank you.

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3 comments

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APART FROM MYSELF I HAVE THREE OTHER FRIENDS WHO’s HUSBANDS HAVE DEMENTIA WITH VARIOUS DEGREES OF PROBLEMS. NONE OF THEM HAVE BEEN ABLE TO RECEIVE ANY HELP APART FROM LEAFLETS. MY NEIGHBOURS HUSBAND OFTEN HAS HER U ALL NIGHT, PULLS EVERYTHING OUT OF CUPBOARDS AND DRAWERS, HAS FILLED SAUCEPANS WITH WATER AND PUT THEM ON THE STOVE, ETC. SHE HAS HAD A LADY COME IN TO HELP WITH SHOWERING BUT HER HUSBAND HAS REFUSED TO COOPERATE. AND SHE FINDS IF HE SLEEPS SHE NEEDS TO SLEEP TO SO HAVING SOMEONE COME WHEN THEY CAN SLEEP IS DIFFICULT. SHE HAS TO TAKE OFF THE PHONE AND PUT NOTES ON THE STREET DOOR NOT TO RING THE BELL.
Hello Dorothy Your neighbour sounds really frazzled, and must really appreciate your support and friendship. Perhaps you could encourage her to ring Dementia Support Line on 0333 150 3456 It sounds like she needs professional support to work out what to do next. I was the part time carer to my mother-in-law. It was really hard work, but at least I could sleep in my own bed.
My mum has plaque causing vascular narrowing in the brain. She is 90, catches the bus to town 10 mins away. Cooks most of her meals and even attend a Caribbean centre twice a week. Last week she won the general knowledge quiz again! Her memory is our concern we would love support fro an Alzheimer’s support worker. She has a consultant who attributes some difficulties to her age. He says she is remarkable for 90. She is taking meds to slow down the diagnosis symptoms. She is on Facebook has a mobile phone and can converse on many topics. she has begun to burn food so no longer cooks for us all on a Sunday we bring dishes. We adapted the house for mum it has raised toilet seats, a perching chair, grab rails at front door, extra stair rails and all rooms were decorated and streamed down of furniture. She wishes to stay in her home and her independence. We are in agreement care home is not for mum . When the time is right she will receive care in the home.
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