My childhood memories are of my dad, Abraham, who was a barber, being very strict.
On Sunday mornings we’d go on walks in the countryside. We’d go to some beautiful place and then my brother, sister and I always had to walk with our shoulders back and stride out.
When I moved to London and started working in theatre, I was able to afford to move him down from Manchester where he lived on his own. I bought him a little flat nearby and he lived there for years.
It was in my 50s, when I was working on one of the Starlight Express productions with Andrew Lloyd Webber and my two daughters were young, that I first started noticing signs that things weren’t right with my dad.
Interestingly, at the start of what I didn’t know was his dementia journey, he had outbreaks of anger that were coupled with some gentleness and tenderness, which was unusual and confusing as I didn’t grow up seeing that side of him. And as his dementia got worse, his gentleness became more encompassing.
But in his mid-70s, I noticed this steadily increasing change of personality.
He’d be in his flat and he’d call me up to say something was missing, like some money or his keys, so I’d rush over and we’d search everywhere. He was convinced somebody had been in the flat and taken them.
There was very little known about dementia at that time so I had no idea what was happening and no one to turn to for help.
I’d get really frustrated and say that there was no one in his flat, he had three locks on his door. I didn’t know that arguing with him was the wrong thing. That I should have put myself in his world, and gently gone on a search with him.
Sometimes he refused to get in his pyjamas to go to bed and I should have let him sleep with his trousers on; I didn’t think about that. It’s all knowledge I’ve gained since he passed away through discovering the Alzheimer’s Society. They changed my way of thinking and I look back with so much regret and guilt.
I cared for Dad for 12 years. He’d turn up on my doorstep not knowing why he was there so I’d put my phone number in every pocket of what he wore because he’d get lost and have to ask his way – I’d often get calls from the police. He’d walk from north London across to east London, walking hours a day.
He was a strong, fit man even though he was small and slender. I was always dashing home to check up on him.
He had Meals on Wheels every day but he stopped letting them in so I had to rush back from rehearsals in central London in my lunch hour, which was hard when you’re working on a show.
It got to the point where I couldn’t manage his care. We still had no idea what was wrong and I didn’t know how to take care of him. The trauma of putting him in a home even though I knew he needed care was too much to bear because he didn’t want to go.
He was in a home in London at first and I went to see him three to five times a week. Then they said they were going to sell the building and we needed to find a new home for him in four weeks, and also he’d been diagnosed with Alzheimer’s.
The impact of dementia on the individual
Most people living with dementia experience problems with their memory and thinking. This can lead to loss of:
- Self-esteem and confidence
- Social roles and relationships
- The ability to carry out hobbies
- Everyday life skills (for example, cooking and driving)
However, the person will still keep some of their abilities. They will still feel an emotional connection to people and their environment, even later on in the condition.
Dementia will affect a person’s day-to-day life. There are approaches carers can take to lessen the impact of any changes and help the person keep a sense of normality for as long as possible.
Source: Alzheimer’s Society
Fortunately my sister lived close to a nursing home in Leeds so he went there and we all used to visit all the time.
In quite a short space of time after that there was such a change in his behaviour.
He loved books and reading the paper cover to cover but he no longer wanted me to read to him; he’d wave his hands and push away the newspaper. It was a shock and devastating to see as reading was his passion.
He just sat in a chair and didn’t want to eat; it was as though all his spirit and life had been sucked out of him. He was the same man I could put my arms around but there was no longer my dad inside him.
I think of dementia like a train going through a tunnel and bit by bit, your memory is left behind until eventually there’s nothing left. Just a beating heart in a human you used to know.
Nothing ever prepares you for when a parent dies. Dad was 89 and I look back and think when he closed his eyes for the last time, that was a blessing. But everything that leads up to it, you think, ‘I could have been there then, I could have got back then’. All those moments forever stick in you.
I want to talk about dementia as much as possible to help people going through the same thing because it is so hard. I didn’t know anything and now I have a lot of people contact me for advice through the work I do with Alzheimer’s Society.
I’ve worked with a lot of young people and often people in their 30s are discovering a grandparent with dementia and they don’t know what to do. It’s amazing how it’s gone from something no one talked about to being the word on everyone’s lips.
The fact is 900,000 people are living with dementia. The increase of people being diagnosed is incredible. They are trying to find a drug so there is hope in sight but early diagnosis is vital so people can be helped.
We know exercise and music help too; let music fill your mind and body. We need to give people access to things that will give them strength.
Visiting care homes with young children is such a lovely thing to do because little ones only see the human being, they don’t see that there’s something wrong. And the delight and the response in the eyes of people who need interaction is just extraordinary.
As told to Rachel Corcoran
Worried about possible signs of dementia?
One in three people born today will develop dementia in their lifetime.
If you are worried about possible signs of dementia in yourself or someone close to you, check your symptoms today using Alzheimer’s Society’s symptom checklist.
It contains 20 questions about possible symptoms or behaviours relating to dementia. If you do not wish to answer a question, just move on to the next one.
This is not a diagnosis but may help you discuss your concerns with a GP.
For more information, visit alzheimers.org.uk or call Alzheimer’s Society’s Dementia Support Line on 0333 150 3456
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