Dementia

The term ‘dementia’ is used to describe a set of symptoms that occur when the brain is damaged by specific diseases and conditions.

Eddie’s Story

Born in 1953, Eddie was one of eleven children with his mother being an upholsterer and his father a Catholic Priests. Eddie is married to Penny. Eddie’s eldest brother Graham met his wife – Penny’s sister – at a disco. So two brothers married two sisters.

When he first left school, Eddie worked as a printer then moved into newspapers, becoming General Manager at the Guernsey Press. Eddie was made redundant when the Press was taken over by the Guiton Group, and he then started doing surveying work for White & Co Removals.

One of the first signs that Eddie had dementia was when he started to struggle with completing the monthly reports for his survey work. He began to have problems working out cubic feet measurements, which he needed to do to ensure all the items would fit into the removal van. When his symptoms first started, Eddie thought that maybe he’d had a mini stroke. He now knows he has Alzheimer’s.

Eddie’s Alzheimer’s makes it difficult for him to get his words out sometimes. He has little concept of time, and often gets lost when he goes out. It takes him ages to read a newspaper now because he keeps losing his place. He used to enjoy doing the daily crossword, but is no longer able to do this by himself. However, if Penny reads out the clues for him he will often get the answer. He often loses things, and then spends a lot of time looking for them.

The changes due to his dementia have felt quite ‘spooky’ for Eddie, especially when he finds himself struggling with familiar tasks such as dressing. He found it embarrassing when friends, relatives and colleagues started to notice, but he was largely unaware of his difficulties.

Eddie says he is used to his Alzheimer’s now and okay with it because he has had it for a long time, but every now and then something comes along that he can’t do. He does get frustrated sometimes, especially when he cannot do things that he used to do easily.

Eddie does now feel able to tell people he has Alzheimer’s, and usually when he does so they are very willing to help him if needed. Eddie carries a card, which says: ‘Please be patient with me, I’ve got dementia’.

Eddie is a very sociable gentleman, a confident and engaging conversationalist, and has always felt comfortable in social situations. He used to do a lot of sailing, and had his own yacht, although his balance isn’t good now so he can no longer sail. Until recently he volunteered with Meals on Wheels, going out with another gentleman who did the driving. He has given this up now due to difficulties with the following the lists.

As a member of Beau Sejour he regularly attends the gym, which helps him to feel better and lifts his spirits although a challenge has been transport as he will not remember where to get off the bus (he gets around this by walking instead). He also enjoys swimming and dancing with Penny.

Eddie says he doesn’t take himself seriously, and doesn’t worry about his dementia. It is important to laugh about things, otherwise you’ll cry.

Penny’s Carer Story

Penny has been married to Eddie (Ed) for 40 years and works full time, making things challenging when she needs to get Eddie ready before she leaves for work. Eddie cannot be rushed with his routine, so if he attends any groups or activities timing can be difficult and arranging transport can also be a problem. Penny’s employers are flexible and they do allow her time to take Eddie to the GP or other appointments.

Eddie does get bored, and finds the afternoons long. Penny would like to find something for him to do while she is at work or perhaps have a buddie to visit and do things with him. She worries about him when she is at work.

Finding support has been difficult because Eddie is still young and the groups he has attended have been mainly for older people in the later stages of dementia. Penny feels Eddie would benefit more from the company of people his own age.

Penny knows that Eddie enjoys listening to music and that this lifts his spirits. He is no longer able to use his iMac, so when she goes to work Penny leaves music out for him to listen to.

Eddie has difficulty dressing sometimes and has been known to put his jumper on the wrong way around, go out with one shoe and one slipper on, or put on a coat in hot weather. Penny puts Eddie’s clothes out for him. He had trouble tying his shoe laces, so they now buy slip on shoes to get around this and make things easier.

Repetition helps so if Eddie does something new, Penny has to do it with him for several weeks until he gets used to it. When Penny has a day off and gives him something to do, he may forget what he is doing half way through the task, but if Penny reminds him he is fine.

Penny uses stickers to label things and write down instructions for Eddie. Penny goes to Yoga once a week and puts a note on the fridge with the word ‘Yoga’ to remind him where she has gone. The stickers are a really useful way of reminding Ed what is happening, or help him to remember to turn lights off, etc.

Penny uses a blackboard to write on to remind Eddie to go the gym or to meet her, and this is a useful strategy for them. They also use a large page-a-day diary in which Penny writes what is happening each day (e.g. if she is working late).

Penny is keen for Eddie to have his independence, but it can be a difficult balance as it takes him a long time to do some things. In today’s society everyone is in a rush, and Eddie needs extra time in shops to put things on the conveyer belt and use his payment card. They tend to go shopping in the evenings now when it is quieter.

Other people don’t realise that Eddie has a problem, and they don’t suspect Alzheimer’s because he is still young and the condition is generally associated with older people. Some situations don’t allow for an explanation of his difficulties, but Penny has found that when they do tell other people they are much more sympathetic and understanding. Where possible Penny does ask people to give Eddie a bit more time to do things.

It can be difficult for Penny when they go to public places. In restaurants Eddie now finds it difficult to choose from a menu and it can take him a long time to decide, so Penny now chooses for him.

In public places such as the cinema or Beau Sejour, it can be awkward if Eddie needs to go to the gents’ toilet. All the doors look the same and he finds it difficult to find his way back. Penny needs to go and stand outside to wait for him.

Both Penny and Eddie like Stevie Wonder and went to a concert to hear him sing. Penny told the marshals that Eddie has dementia and asked if they would walk with him to the gents’ toilet. They were extremely helpful and it was a weight off Penny’s mind knowing he could go and they would wait for him, and they didn’t make him feel silly.

When Eddie goes to the gym it takes him a long time to get changed, so Penny finds it easier if he goes dressed ready to exercise. Eddie has trouble finding his way to the locker room and identifying which locker he is using. Penny feels that if he had been able to use the same locker each week, that repetition would have made things easier for him.

When Eddie goes out on his own he can get lost sometimes. Eddie does say to people that he is lost. People who know Eddie will phone Penny to let her know they have seen him and ask if he is okay being where he is. Sometimes people have walked him back home when he has got lost.

Penny and Eddie have a supportive family around them, and that helps a lot. Their grandchildren understand that grandpa forgets things, and they are okay with it and are really good with him.

There was a patch during which Penny wondered if she could cope, but they got through that. Penny and Eddie both have a good sense of humour, but they do get dark moments when they question things and feel unable to cope.

Penny says that ‘you just have to laugh about it all sometimes’.