Living with dementia: Roy and Joyce's story

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Determined to live life to the fullest Roy shares his experience of how he and his wife Joyce are dealing with the effects of dementia. 

It's easy to be told a person has no memory but, unless you have experienced living with the illness first-hand, it’s hard to comprehend. Simple routine tasks become awesome hurdles to overcome for a dementia sufferer because they have no memory of ever having tackled them previously. Can you imagine that?

Since the A Million Hands video was made, there has been some deterioration in my dear wife’s condition but, despite this, we continue to enjoy life to the full. 

Frustration remains our worst enemy. If Joyce becomes exasperated over some difficulty she encounters, it affects us both because, generally, I am the only person available on whom she can vent her frustrations. Sometimes she forgets that I’ve told her things and feels I am keeping her in the dark, that I cannot be trusted. Initially I felt deflated and dismayed; as a carer you do your utmost to ensure the maximum comfort, compassion, kindness and affection at all times, so to be told you can no longer be trusted can leave you gutted. 

I find it easier to go along with Joyce’s version of events because a golden rule with dementia sufferers is not to argue. It upsets them, knocks their confidence or confuses them. Unless it’s essential from a safety or health point of view, it’s more tactful and calming to agree with what is said at the time and then change the subject.

Despite these challenges our love for each other has grown stronger than ever since Joyce was first diagnosed on 31 March 2009. That we have gone on to enjoy seven more wonderful years of real happiness and contentment together shows that life does not have to end when dementia starts. Hardly a day goes by when we are not off in the car visiting some tourist attraction, coffee shop, garden centre, wildlife park, or enjoying a stroll in the countryside. Our favourite pastime is walking through woodland or a nature reserve. This passion for nature is therapeutic for us both. Joyce may not remember what she did earlier today, but that does not detract from having enjoyed every minute of it. There’s an added bonus – return a few days later and it’s just as exciting and new as the first visit.

Challenges do confront us in the community and, as Joyce’s carer, I am on guard for any hazards or difficulties she may encounter. Facilities such as public toilets can be a minefield for someone with no short-term memory retention. There are so many different types of tap fittings, flushes and door locks/handles. For someone who has difficulty sorting out the hot tap from the cold tap at home, you can imagine the dilemma Joyce sometimes faces on a trip to the bathroom in a restaurant or shop. Occasionally, she finds herself locked inside a ladies’ loo unable to remember how to operate the door-release lock. More than once I’ve had to rescue her by using a coin on the external emergency groove. The best scenario is a unisex facility large enough to accommodate two people comfortably.

Caring for someone with Alzheimer’s is about ‘being prepared’ for anything, especially as it is so unpredictable.

Together, we make a strong team so dementia is sidelined for long periods. Roy and Joyce 9, Dementia 1!

To watch Roy and Joyce’s video, visit A Million Hands.

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