'We rarely watch TV as Martin believes events on the screen are happening in our home'
There are over 750,000 people in the UK who have dementia — 18,000 of them are under the age of 65. Few diseases are more frightening but the Alzheimer's Society reckons that by 2050, there will be 1.8 million people affected so we'd better get used to talking about it. Barbara Steele's husband Martin got the disease in his 50s.
Martin was diagnosed with early onset Alzheimer's Disease in 1999 when he was 58 but I think it started in 1997. At first the changes in him were slight - questions often repeated and forgetfulness of names and places. Even after the diagnosis Martin remained calm, convinced that a cure would be found before it became serious. I was the one who panicked and could visualise our lives disintegrating.
During the following five years we would pay regular visits to a specialist where he would be given verbal and visual tests. Over the months it became apparent that he was losing the ability to name everyday objects and to remember dates, places or persons. This built up a frustration within him so that the visits became more and more difficult. He would walk out of situations if they displeased him and turn angrily on people annoying him.
Martin, pictured left with Bertie, had always been strong, active and extrovert. Slowly he became less sociable and shied away from company. I was always honest with people about the disease but there is a stigma about mental illness that makes some uneasy. It was obvious that we were becoming more cut off from company.
He began to give up on relatively easy jobs. His concentration span was lessening. I would beg him to cut the grass but usually finished it myself. Checking the petrol, tyres, finding the keys to the tractor were tasks left to me. He became less and less active and his strength diminished.
Tying shoelaces or buckling a belt became difficult. Once an avid reader, Martin would pick up a book and start reading at the first page every time. Newspapers were discarded, headlines only glanced at. He would continue to watch the news on television but retained no memory of the events shown.
He began losing items. I had to find safe places for keys, removing them from doors.
He lost his wallet and I cancelled his credit cards, only to find it the following day under the mattress. That became his favourite hiding place.
You don't notice the decline at the time. It's only when you stand back and say 'This time last year we did this' that you realise that certain activities have become impossible.
Martin continued to drive, refusing to give up. Although I never felt worried with him I wanted him to stop. We continued to run a business but his difficulty comprehending situations became obvious.
His language skills started to fade. At first the nouns disappeared from his vocabulary so that we would be communicating more or less using verbs until they too started to go.
At this point, in 2003, we decided to find a smaller house and garden. Here we had the opportunity to create our own garden and a fishpond. Martin always loved gardening and we had always had fish. Martin enthused at the idea and so I marked out a plan for the pond. I really believed that he would be enthusiastic about it but in the end it was me who dug out the flowerbeds and excavated the pond while Martin looked on.
The house needed re-decorating and some building work. Martin refused to help. He would often become angry when I was painting and papering and I soon learnt to keep my mouth shut. At times like that he was best left alone. And so it was one afternoon that he went missing. I did not notice the hours go by. Martin was sitting downstairs listening to music and I was decorating up
stairs. When I looked for him some time later he was no longer there. I took the car and searched for him but could not find him.
I calculated that he had been missing for three hours. I waited for another two and then alerted the police.
They began searching for him that evening. I stayed awake until 6am the following morning hoping that he would find his own way home. Later that morning a search was mounted using tracker dogs and heat searching equipment in a helicopter and he was found. He was none the worse for wear, a few scratches and fatigue.
He had walked for miles and was actually heading for home when exhaustion struck. He had found a rocky outcrop overlooking a nearby lake and had slept. He would not talk about the episode.
I changed our car and as it is so unfamiliar to him Martin does not drive it. However, often in the car he suddenly becomes bad-tempered and will grab me or the wheel or the brake. He hates speed, tree covered roads and bends. Shopping too brings problems. He will often have an outburst in a shop and march out.
He has taken to wandering outside. If he is absent for more than twenty minutes I take the car to look for him. Often he becomes belligerent when we are eating and leaves the table only to return an hour later and recommence eating. His speech is unintelligible. I have to dress and shave him.
We rarely watch the television as Martin often believes that the events on the screen are happening within our own home. Thus fires and bombings are uncomfortable subjects to watch. He has even hammered the screen on occasions if he finds people's antics offensive.
At one point the evenings became unbearable. He would refuse to get ready for bed and if I tried to undress him he would lash out and hit me. It would often take a couple of hours to calm him down. Sleep became impossible. I was always alert in case he got out of bed. However recently I have been putting him to bed at 9.45pm. and this seems to be the optimum time for him. I light a lavender joss stick and within minutes he is asleep.
Now the mornings bring the problems. About a year ago he began conversations with the mirrors. Some of the images are his friends, others he shouts at violently. As soon as he wakes he walks the house talking or shouting. I let him continue until I can get him into the bath. At this point his wrath turns on me and I just have to be as tolerant as can be. By the time he is dressed he is usually calm and the day starts again, the same as yesterday, the same as tomorrow.
Martin is fit and well-looked after. He responds to the medicines he takes but together we have become increasingly isolated from society. Mental illness is not easily accepted; people are scared of it. And yet many people with Alzheimers are not old. They are in the prime of life and deserve better. To be termed senile at the age of sixty is as big a handicap as a physical disability.
Page created on September 1st, 2006
Page updated on June 17th, 2010