'My dementia is so bad I often forget to eat or drink - the clocks changing makes my life even harder'

A man living with vascular dementia and Alzheimer’s says the conditions mean he has “no concept of time” and the clocks changing this weekend will cause him even greater difficulties. Gary Whiting, 68 from Carshalton in Sutton, has spoken candidly about the frustrating and “infuriating” realities of dementia, after being diagnosed six years ago following a stroke.

Gary had a stroke when he was in his 40s, but instead of improving, he developed vascular dementia; meaning the damage from a stroke causes long-term problems with memory and thinking. Now, Gary relies heavily on his wife Jackie to help him day-to-day.

Gary told MyLondon: “Time is almost irrelevant now as I struggle to work out what day it even is. I often get disorientated and forget to eat or drink. Sometimes it gets to the latter part of the afternoon and I realise I haven’t eaten. Before, I was a greedy old sod, my weight wasn’t very healthy. But now it’s changed in the reverse. With the clocks changing, this will only mess things up more.

“I have to rely on my watch all the time to know what time it is. It’s only when the hours change that I realise there is some sort of variation. I have horrendous problems with appointments. I have to totally rely on Jackie to put it in my diary.”

Gary was a jeweller throughout his working life, having started making jewellery in Cartier on Bond Street as his first job out of school. To this day, he loves practical tasks, including working on his train sets in his purpose-built insulated shed in the garden. But he says he gets easily angry and frustrated when his dementia means he completely forgets what he is doing.

He explained: “It’s like waking up in the morning, I have things I want to get sorted – like making phone calls, buying stuff on the internet for my train sets. But eventually I find that the day has gone and I haven’t done it because I got distracted. I get very agitated about things. It’s so frustrating and infuriating when I know something is so simple and I should be able to do it and I just forget. I’ve had a couple of episodes in the past where I just explode. It builds up and builds up and I just lose my temper.

“Making stuff has always been my life. So it just makes me so angry. Every time I watch the antiques roadshow, I can see pieces of jewellery and I can see exactly how they made it, it’s as if I’m almost still there on Bond Street. I can visualise the design and how it was made. But it’s also like the memory has completely gone.”

Gary met his wife Jackie in the 70s, when they went on blind date and went to the local pub

Gary met his wife Jackie in the 70s, when they went on blind date and went to the local pub – the Dukes Head in Wallington. About 40 years on, Jackie emphasised that being the relative of someone with dementia comes with huge challenges.

Jackie said: “He can’t cook a meal anymore, he can’t carry his meal to the table because he’s also physically disabled because of the strokes. We both love Swarovski jewellery and their emblem is a swan. We always say, he’s the swan gliding on top and I’m the feet frantically paddling in the water underneath.

“It’s exhausting and I must admit I do get resentful and angry. Because he can talk well, I find it difficult to understand that there’s things he can’t do.”

The Alzheimer’s has emphasized that people with dementia can find themselves disorientated by the clocks moving back. As winter mornings become darker, people with dementia may find it difficult to differentiate between 6am and 6pm disrupting their biological clock, making it hard for them to get enough sleep.

Some people with dementia might also experience something called ‘sundowning’ when the days get shorter. Sundowning refers to a change in behaviour in the later afternoon or towards the end of the day. During this time, the person may become intensely distressed or confused.

Here are three top tips from Alzheimer’s Society to help people with dementia overcome challenges faced by the clock change:

1. Having a routine during the day and at bedtime can help regulate a person’s disrupted body clock. Doing regular activities at the same time each day – for example going for a walk after breakfast, can help a person with dementia make sense of the time.
2. Going outside in the morning, can help set a person’s body clock too, making them feel sleepier during the evening. If the person is unable to go outside, the same effect can be created by switching on a lamp or lightbox.
3. Alzheimer’s Society’s online shop sells various ‘Day and Night’ clocks which have all the features of a traditional clock, but also include simple day and night visual symbols to help people with dementia distinguish the time of day. The clock can be purchased here: Day and Night Clock – Alzheimer’s Society Shop (alzheimers.org.uk)