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Your stories

Steve's Story

The Next Step

I knew mum had dementia in 2009 but it wasn’t until 2012 that her formal diagnosis of Alzheimer’s disease was made.  It took more than 2 years of gentle persuasion to get her to realise that her memory problems and withdrawal from social and family circles, was more than the depression and grief (she was attributing her problems to her son who died of cancer 7 years earlier).  In fact she has never realised or accepted her diagnosis.  She refused MRI of the brain and was very reluctant to go to clinic as “there was nothing wrong with me”.

At the same time mum was being diagnosed with Alzheimer’s, dad [mum’s full-time carer] was diagnosed with bowel cancer and had a long admission in hospital.  This led to a family ‘emergency’ in caring and staying with mum while dad was in hospital for almost a month.  Despite visiting them 5 times a week in the previous years and ‘understanding’ the issues and needs of mum and dad, it wasn’t this episode that I fully realised how difficult it was for dad.  I think you have to live with someone around the clock to fully realise what the issues are.

In 2015 my dad sadly died and mum came to live with me and my wife.  This was not a difficult decision for mum as she was vulnerable at this time and wanted to be close to me.  However, the change in home, the death of her husband and different routine was difficult for her as it would be for anyone without dementia.

Three years on and mum’s function, memory and ability has deteriorated and the support she requires has increased, while the support I need as her main carer has decreased.  This I find interesting even among family members but I know I am not alone.  I have my own health consultancy so my ability to work has not been impacted so much, although I cannot teach now and arranging meetings is difficult.  I have had to pass work on and turn work down due to lack of support.  When something is very important my wife has to take a day off work which is not always possible.

Some people say to me ‘why don’t I get carers in’?  There are 2 reasons for this at the present time.  Firstly, I want to look after my mum.  If I can balance care, kindness and love with work from my consultancy and being able to manage that work, I am comfortable with this. Secondly, as an independent nurse with professional and personal knowledge of care and knowledge that few agencies (less than a third I believe) have any proper training in dementia, I would be quite upset, annoyed and distressed at the fact that carer’s would not be providing mum with the holistic needs she requires.  So at the moment a friend of mine who I trust implicitly spends one afternoon a week with her having a sing-a-long and laugh is good for me as well as mum.

However, I have recently found a new day centre that has a slightly different take on dementia care with more support, facilities and has more activities that my mum would like (knitting and singing).  It is run by a specialist dementia nurse and I would feel comfortable leaving mum there for an afternoon.  We spent a couple of hours there and she didn’t want to leave!  It is the Me2u Centre in Kirkby, Liverpool.

I think that ‘letting go’ is difficult for any carer and if you are leaving your loved one with someone else there has to be a real binding trust, an understanding that it is equal to or better than what you can do and confidence that safety and safeguarding is a big part of their time there.  It can take a long time find someone or some organisation that achieve these things and that is hard.

As a carer [with a mortgage] I want the best of both worlds; I want to look after my mum and earn money to pay the bills.  So I have had to be inventive, creative and do things differently.  I would have to say if it wasn’t for my mum’s diagnosis I would not have hit upon the idea of a ‘dementia friendly tradesperson’.  I had an idea with a couple of my builder friends and we have created an education and training company called Care Aware International.  We have taken all the things I would want for my mum and other people with dementia (safeguarding, respect, trust, safety, etc) and built a training module for tradespeople to become registered as Care Aware practitioners.  They work to a code of conduct, to processes and in conjunction with families – our face to face teaching starts this summer.  We are supported by TIDE, Liverpool John Moore’s University and Alzheimer’s Society.  It was nice to repay TIDE’s support by supporting by contributing to the opening plenary at last year’s UK Dementia Congress.

So my route as a carer has been an amazing journey and I have learnt so much through the caring pathway (despite being a nurse for more than 30 years) and I feel privileged to have looked after dad and now mum.  I also feel lucky to have the ability to care for mum full-time and still earn a wage as well as setting up a company that will have positive outcomes for people living with dementia and their carers across the world.  I am also lucky to have my own health.

Here’s to the next step on my journey…

I think that ‘letting go’ is difficult for any carer and if you are leaving your loved one with someone else there has to be a real binding trust, an understanding that it is equal to or better than what you can do and confidence that safety and safeguarding is a big part of their time there.  It can take a long time find someone or some organisation that achieve these things and that is hard.

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