My name is Hilary and I am married to Kevin, who lives with Alzheimer’s.
We have been together for the last 46 years – and they have been quite eventful! We have moved house numerous times, and lived in Australia for 6 years, 4 of them in a remote iron ore mining town on the edge of the Gibson dessert. In 1978 we returned to England with our two daughters who were born in Perth, Western Australia, became foster parents to five teenagers, and adopted a baby with Downs Syndrome. In the space of three years our family grew from the 4 of us to 10. Life was busy to say the least!
Our Christian faith is central to our lives, and for 10 years Kevin was the Pastor of an Independent Baptist church in Southend-on-Sea. Towards the latter part of his ministry there it was becoming obvious that he was having problems with his memory, and whereas it had never been a problem for him to prepare and preach a sermon, things were becoming more and more difficult. Coupled with the memory problems Kevin also had a sleep disorder, and would often fall asleep at work without realising it.
After various tests at the local hospital, we were informed that it was unlikely that Kevin would work again. We decided to downsize and re-located back to Leamington, where several members of our family lived. There was also a specialist home nearby which could cater for our special needs son, who by this time was in his early 20s.
There was now just the two of us living in a retirement flat. Kevin had many tests to try and pinpoint what was causing his memory problems, which by this time were getting steadily worse, but no specific diagnosis was given, which Kevin found very frustrating.
Our main source of help and support came from the Alzheimer’s Society, and during one ‘cafe’ we were approached by a Consultant, who, after talking to us both, arranged for Kevin to be seen by Dr. A at a local mental health centre. Even though Kevin had been on medication for Alzheimer’s prescribed by our GP, he still hadn’t been given a reason why he was on this.
After many years of not knowing what was really happening, Dr. A finally told Kevin that he had Alzheimer’s. For many people that would be a real shock, but for Kevin it was a relief. At long last we had a concrete reason for the difficulties he had been experiencing. Alzheimer’s is not a diagnosis anyone wants to have, but sometimes knowing that there is something wrong, but not knowing what, is even more difficult.
Eleven years have now past since Kevin had to stop working, and although the illness has inevitably progressed, he is still able to enjoy some measure of independence. One of the most useful tools he uses is a card made for him by the local Alzheimer’s Society stating that he has Alzheimer’s disease. When he goes to the local shops, he shows a member of staff the card and they accompany him round the shop to make sure that he gets the right things on his shopping list, and help sort out his money. The staff in these shops have been really helpful, and Kevin no longer has to worry about getting the wrong thing, or forgetting something altogether. Full marks to all the establishments who have signed up to become Dementia Friendly – it makes a huge difference to the lives of both those with dementia and their carers!
We have trialled a few tracking devices over the past few years, none of which have been very successful, and although the new smart phones can incorporate a tracking system, these types of phones are far too difficult for people with dementia to use.
Kevin has a special phone made by Doro. It only has 4 buttons, marked A,B, C&D, next to which you can write a person’s name. For him A is home, B is my mobile, C is his brother, & D is one of our daughters. It also has an SOS button for emergencies. At the moment Kevin can still use this (usually!) and it means we can keep in contact with each other if he goes out.
Life does not have to end when dementia begins but it can often bring many difficulties. Ever the optimist, Kevin often says ‘well it doesn’t hurt’; physically that may be so, but psychologically things are much harder.
When someone tells you they have Alzheimer’s or dementia NEVER say ‘I can’t see anything wrong with you’ or ‘Oh we all forget things’. You wouldn’t say that to someone who told you they had cancer, or some other illness, so just try to listen and treat people with kindness!
If you would like to learn more about Hilary and Kevin’s experiences of living with dementia, please visit Coventry and Warwickshire Living Well with Dementia Portal’ Dementia Friendly Communities page and watch the short Dementia Friendly Warwickshire video clip.