barbara with her dad

My Encounter With Dementia

We recently  invited Barbara Lee from Dementia Together Wirral to be our guest blogger and Barbara wanted to share her own personal experience of her father’s dementia and the reason why she is so actively involved in Dementia Together Wirral…

Hi there.  I am writing this article on the 6th anniversary of my Dad’s death about a subject close to my heart, dementia.  It is my personal story about my encounter with the disease and how it has affected my life.

Dad was diagnosed with dementia in 2007 and we lost him in 2012.  It was a very trying few years and it is the reason I work hard today to help people living with dementia and their carer.

One day in 2007, I received a phone call from Llandudno (where Dad lived).  My Son, Mark, and I lived on Wirral.

“Is that Barbara Lee, daughter of John Lee from Llandudno?” asked a male voice.

“Yes,” came my tentative reply.

“This is Doctor ? (I can’t recall his name) from Llandudno hospital.”

My heart sank!

“I’m calling from the memory clinic at the hospital and I need to make arrangements with you to bring your Dad to clinic.  He keeps forgetting to come!” explained the doctor.

I began to laugh.  Believe it or not, this was such a relief.  I had been raising the alarm that something was wrong with Dad for two years.  Forgetting to go to the memory clinic really amused me!

The appointment was duly made, we attended the clinic, and Dad received diagnosis of Alzheimer’s and vascular mixed dementia.

I won’t bore you with a whole five-year history.  Suffice to say that it wasn’t easy.  Mark and I knew little about dementia and embarked on a huge learning curve.  I have Alzheimer’s Society Wirral to thank for their tremendous help at that time.

During those five years, I joined Alzheimer’s Society Wirral as a member, and I volunteered at their activity groups.  Because I enjoyed the work so much, I took a temporary job as Activity Co-ordinator at a local nursing home but, when this job ended, I was given a job as a carer to try.  It wasn’t for me and I only lasted 3 weeks as I couldn’t emotionally cope with it.  I applaud all care workers – you are such special people.  Later, I again worked in a care home as a cleaner and laundry worker.

Through these jobs, spending time with Dad, and being allowed to join in activities with Dad, I gained a lot of knowledge.  One thing I realised was that people living with dementia in their own homes were missing out.  Alzheimer’s Society Wirral had to close their activity groups due to lack of funding.  That left little out in the Wirral wilderness for people with dementia and their carers to do.

I decided to look at running a “roving” activity service for such people.  However, the logistics around this were enormous – a van (I don’t drive!), equipment, volunteers, training, risk assessments, fitting around care plans, etc, etc – and the fact I was nearing retirement meant that I squashed the idea.

On retirement, I became a Dementia Friend and a Dementia Friends’ Champion and I campaigned for a Dementia Friendly Community where I lived.  Alongside Alzheimer’s Society, I founded Dementia Action Alliance, which I Chaired for a while.

My heart, though, was with the person on the ground – the person living with dementia and their carer, so I decided to leave the campaigning to others.  On 5 May 2015, I opened my first Memory Café (in a small village café which was far from ideal).  Over the years this has grown, moved a few times, and developed into 3 groups – Musical Minds, Active Dementia and another Memory Café, all on Wirral.  Musical Minds is a monthly group with live artists to sing along to.  Active Dementia is a group for crafting, reminiscing, playing games, friendship and fun.  The Memory Café is like a coffee morning for those with dementia and their carer to interact with others in the same boat (we also have books and table games).

Meanwhile, in October 2017, Alzheimer’s Society Wirral closed their doors, again due to lack of funding.  They were still running some memory cafes along with a few other social groups, which were due for closure along with the Society.  Also, the volunteers, many of whom had attended and worked with these groups for years, were without work.  Some of those volunteers decided this couldn’t happen – they would run the groups themselves.  They asked me to join them, which I have gladly done.

Thus, Dementia Together Wirral was formed.  We obtained charity status in August 2018 and we are going from strength to strength.  New groups have been developed, groups already running by churches and other people have joined us, and my groups will merge with the charity in January 2019, giving them sustainability.

This has been my encounter with dementia thus far and I love the work I do.  My philosophy is that if I have made one person with dementia smile in a day then I have done my job well.

This is Barbara Lee signing off.  Thank you for asking me to be your first guest blogger.  Have a very Merry Christmas and a Happy 2019.

If anyone wants more information about my groups or Dementia Together please email me

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