"I have dementia but my life isn't over', says Sandy Read

When I was 55 I started realising things were not right.

I would go shopping and suddenly I didn’t know where I was - I was frightened to death.

I can remember once being outside a shop. I was looking for BHS, but couldn't find it. I stood there, feeling frightened. At that moment the letters just didn't make sense to me. The more I panicked the worse it got. As it turned out, I was actually standing right in front of BHS, it but somehow I didn’t know it was there.

When you have dementia you can look at a name or building and the words and letters get confused. I remember asking someone where I was; they were quite nasty about it and said ‘You’re in front of it you silly woman.’ That made it all the worse. To this day, I never know how I got home.

I was still working when it started but most of the time (like now) I can’t remember what I did for a living. I think it had to do with computers, and teaching. I remember teaching children in Hong Kong, actually.

It affected all areas of my life. I'd put the kettle on without water in it and blow the fuses, and of course you leave the iron on. I put things in the wrong place all the time, like milk under the sink or polish in the fridge.

Sometimes I would go into a shop and when I was at the till I couldn't recognise the coins. People in the queue started tutting. I didn’t know what was happening to me. Now and again I had problems recognising my family, especially those I hadn't seen in a while, and in fact I'm still sometime s not sure who they are. I knew there was something there: you can’t love somebody and not remember who they are anymore.

I tried to hide it from everybody. You think everybody thinks you’re stupid.

But my family realised there was something wrong. They would say ‘That’s the third time you’ve said that, what’s the matter?’ or ‘What’s wrong with mum?’ I got withdrawn and I kept myself in the house. I didn’t go out or pick up the phone. I felt safer with a locked door behind me. I got depressed and I was very isolated.

Seven years ago I was diagnosed with memory loss. I was 59. I just thought ‘My life is gone; it’s finished’.

And that’s when I first came to the Forget Me Not Centre.

The first time I walked in I remember not wanting to be there. I knew I had problems but I just felt that I didn’t belong there. I didn’t think I needed it.

But it has changed everything for me. Fear held me back. But a lot of the work we do at Forget Me Not is trying not to be too scared.

It’s taking each day at a time. If I’ve got a problem, they take me through it and we solve it together. It’s like a home from home. I learn new skills and we are encouraged to do things we’ve forgotten how to do. When I first came someone took the bus with me to help me get my confidence back and eventually take the bus again by myself.

We’ve all got this weakness but we have strength in numbers.

When I can’t do something or when I make a mistake I don’t dwell on it. If I make a mistake I say I’m sorry but I never say ‘I’m sorry I have dementia’. Dementia is not who I am.

And I’ve found ways to remember over the years.

My granddaughter came one day and I couldn’t remember her name. Lynda Hughes at Forget Me Not said, ‘She reminds you of happiness and warmth so that's like the drink sherry and her name is Cheri’. So now when I see her I think she’s so warm and lovely and I remember her name, Cheri.

But sometimes I don’t remember at all.

Just the other day, it was my daughter Sam’s 40th birthday and I didn’t know she was 40. It such a big event in someone’s life and I forgot. But we just laughed about it.

I get stressed sometimes but I’ve got everything I need to cope, I have friends at Forget Me not and family to support me.

I can remember things that happened when I was a child but the middle part of my life seems to have gone.

Yesterday is gone, tomorrow is a new day and today is our day. That’s what I started telling myself when I realised I couldn’t always remember yesterday.

I just try to do as much as I possibly can and stay active. You have to push yourself going forward all the time and not look back.

People think when you have dementia your life is over. You forget but you still have the ability to learn.

I knew I had memory problems but I was diagnosed with Alzheimer’s about three years ago. I know it but I don’t remember it.

The worst thing in all of this is the loss of independence and not being able to go off when I want to. It’s not as if I broke my leg and my family can mend it. All we can do is make the best of what’s happening to me. I imagine it’s going to get worse obviously.

Sometimes I have hallucinations, which happens with dementia. At times I see really big spiders in my bedroom.

There is this stone frog in my garden and I went out there once and saw it jump towards me. I had to keep telling myself ‘You’re not real, you’re not real and then it stopped.’ I was so fearful. I told my husband about it but for a long time I would not tell anyone else. I used to worry people would think I was crazy.

It’s hard on me but it will be harder for my family when I forget them, as long as I'm content and people are nice to me then I think I'll feel okay. They will be the ones who will find it hard.

I’m making a memory box with pictures of my family, places we’ve been and objects that I love, bring me comfort or remind me of things. It will help me at a later stage. I’ll need that trigger to remember.

But I’m not afraid anymore. With dementia it’s about the way you look at it. I choose to be positive.

I try to push myself. I have a routine, which helps me. I wake up, have a shower, get dressed and have breakfast. Of course my husband needs to help me lay out the clothes the night before. I clean during the day - I have an iron and a kettle that turn themselves off - go shopping with my daughter and keep busy when I’m not at Forget Me Not.

Of course things like cleaning take a lot longer than they used to and I can’t multitask anymore but I do it anyway.

The more you use your brain the longer it’s going to keep active. You lose it otherwise. I make myself do so much more than before.

Since I’ve been at Forget Me Not, I’ve been yachting, I’ve done radio interviews and given gone to talks on dementia. Life is an adventure now for me because I do so much. Life is very precious to me.”

• Alzheimer's disease is a progressive disease and the most common cause of dementia.

• More than 520,000 people in the UK have Alzheimer's disease.

• During the course of the disease, proteins build up in the brain to form structures called 'plaques' and 'tangles'. This leads to the loss of connections between nerve cells, and eventually to the death of nerve cells and loss of brain tissue.

• For most people with Alzheimer's, the earliest symptoms are memory lapses.

• As Alzheimer's progresses, problems with memory loss, communication, reasoning and orientation become more severe.

• In the later stages of Alzheimer's disease someone may become much less aware of what is happening around them. They may have difficulties eating or walking without help, and become increasingly frail. Eventually, the person will need help with all their daily activities.

• Most people who develop Alzheimer's disease do so after the age of 65, but people under this age can also develop it. This is called early-onset Alzheimer's disease. In the UK there are over 40,000 people under the age of 65 with dementia.

• For reasons that are not clear, twice as many women over 65 have Alzheimer's disease as men.

• There is no cure for Alzheimer's disease, but a lot that can be done to enable someone to live well with the condition. This involves drug and non-drug care, support and activities.

• Alzheimer’s may not be diagnosed when the first symptoms are detected. This is because doctors may be reticent to rush their diagnosis. They may need to wait and see how they progress before making a formal diagnosis.

• The Forget Me Not Centre is based at Whitbourne House in Park South.

• It works with people who have progressive memory problems earlier than expected due to an illness.

• Users organise and take part in a variety of activities including gardening, cooking, art, DIY and pottery.

• The service helps users reclaim, maintain and develop productive and enjoyable lives.

• It also supports them to find ways of managing the symptoms and effects of dementia.

• For more details go to www.awp.nhs.uk or call 01793 436775.