Many people have a dream to do something that often feels out of reach, unobtainable. The dream to change the care of older people, especially those with dementia, had been a picture image in my mind from being a young child, watching my grandad change as his dementia progressed and eventually having to move many miles from his home to enter an institution for people who were senile. As I grew older, although the thoughts were still present, they moved to the back of my mind as other issues took over – marriage, children, job.
Sometime later my grandma started to develop dementia and I became her main and only carer. The balancing act had begun. Trying to fit everything in and look after someone who was becoming more and more dependent. Eventually my grandma went into a home, thankfully for only a short time. She fell, broke her hip and died not long after the operation. Most people would think that would be the end. In actual fact it was just the beginning. The loneliness as a carer was nothing to the loneliness of being without her. Constantly going over the what if I had done things differently would she still be around. The guilt of her going into a home and living in a way I knew she did not want to live. Plans began to form in my mind and with a lot of help from a few exceptionally fantastic friends – Genesis was born.
Genesis, meaning to us, in the beginning, the start of something new, a journey to change lives. The people who attend Genesis are from the generation who have seen war, paid taxes to start the NHS and move our education system forward. Most of them worked hard to bring families up at a time when benefits didn’t really exist.
Older people deserve respect and dignity as they move towards the end of their lives. For many, dementia comes along and changes everything. Slowly they lose their sense of identity, thoughts and words become jumbled and faces become unrecognisable, without a name. Dementia has a stigma that affects the whole family. Friends may not always be around like they used to be. Their world becomes a smaller and often a more frightening place. For the person who cares for them it is often hard to find someone to stop with their relative so that they can go out on a regular basis. And respite care!!
Genesis was set up to provide somewhere for older people to meet with their peers and find friendship and stimulation if that is what they wish. The main reason for Genesis was to help carers through times of sleepless nights and long days. To provide somewhere where their loved ones could go whilst they had respite from their caring role. All the staff at Genesis have been, or still are, carers. They understand the frustration, anger, guilt and all the other emotions which have a habit of raising their heads, especially in the middle of the night.
I have seen the first half of my dream come to life. Genesis is 10 years old in 2016 and it is now time to try and complete the work visualised so long ago. At present Genesis is situated in Trinity School Rooms – part of Chorley Methodist Church and whilst we are grateful for the Church hiring out their rooms to us, the building has now begun to restrict the type of care we can provide. We have been fortunate enough to look after some individuals for 6 years or more, but unfortunately as they progress on their dementia journey their needs change and increase. The toilets are small, the bathroom does not exist, in winter it can be very cold in the toilets and in summer we cannot really go out for there is no enclosed space. We share the building with many other organisations and therefore security and movement around is becoming a problem.
But like in all good dreams, there could be a happy ending. For Genesis it comes in the shape of a large detatched house stood in its own grounds behind a high wall. We wish to obtain a property which would help us create something special for carers.
We would still have the well-being and respite centre but we would like to move a step closer to providing a unique type of respite care. This would be in the form of a respite hotel. The house we have in mind has 4 double bedrooms which would allow us to create a feeling that they are somewhere special – on holiday. During the day ground floor would be open to them to join in the many activities we offer, or if they choose they could go into the garden or be a man in a shed! But the real bonus would be no locked doors – entry into every room and access to the outside. For carers it would mean the chance to book a room 12 month in advance if needs be and know for certain that it would still be available to them at the allocated time.
Dementia care is changing – it has to. But for many individuals it still means giving up their home, their possessions and going to live with a large number of people they do not know. Please, if you can, put yourself for a few moments in their place.
Dementia is an illness which robs you of your very being. Words become mixed up, images cannot be held for long, names and faces can become lost. If this is not enough you have to leave your home to go and live in a strange place, with people you do not know or recognise and to make it even worse they attempt personal care with you. Then they wonder why you get frustrated, angry and sometimes withdraw into your own world.
The house we are looking at also has a stable block at the bottom of the garden and we would like to see our cafe expand. There would still be room for us to set up a training room which would enable us to share our experience and knowledge with individuals who are starting out on their caring journey.
Genesis was born out of my desire to change lives for people with dementia but in fact it has changed my life completely. It has brought me into contact with some outstanding professional carers who share the same ethos as myself. I have met carers who have been in their caring role for years without any thought to themselves and I have been privileged to assist in providing respite care for some truly remarkable individuals. Within Genesis we are known as the Genesis family. We try to give as much care to the carers as we do to the people they bring to us. With support, people with dementia can within their own ability, live full and positive lives. Dementia care should be positive and ever moving forward to enable us all to remove the fear and stigma that often accompanies the illness. At Genesis we are very positive, but we are also realistic and for us to reach this dream we know we need the help of a host of angels. We have been very fortunate with the host of people that have already grown wings and helping us to reach our goal – but if you are feeling uncomfortable, especially between your shoulder blades, it could be that our message has reached you and you are starting to sprout tiny wings!!! If this should be the case, then please come and visit us, experience what we are trying to do and create and you never know the wings you grow may just enable us to fly to new heights.