In the shoes of … Suzy Webster | Expert by experience and dementia trainer

Another great first time blogger in our “in my shoes” series. Another very powerful post about how dementia affects not only the person but has a profound effect on the wider family. Suzy Webster talks about her grandmother’s journey with dementia and the improvements in understanding and attitudes she has witnessed over the last ten years. Now she is teaching her young children valuable lessons and focusing on the person within as they come to terms with the new dementia diagnosis of Suzy’s Mum.
An emotional journey shared with love and compassion…

My Grandma and I had always been close.  She was an everyday feature in my life; she lived on the same road as us and looked after me when Mum was at work.  Grandma was an independent woman within a family who all knew she was in charge!  She had a great sense of humour and was happiest in the company of others.

I was told by a psychiatrist in 2002 that Grandma had dementia and needed to go into a care home.  He told me she wasn’t safe in her own home.  The responsibility for this fell on my Dad and me.  My Mum had health issues herself. I found a care home with the help of a social worker.  She said the home was nothing to look at but the quality of care was the best.  And that is what I wanted, the best for my Grandma!!

The day we drove Grandma to the home, she only had one suitcase – her life’s belongings had shrunk into a case as she sat in the front of my little Ford Fiesta.

I was advised not to visit Grandma for 3 weeks, this used to be the way things were done to enable a resident with dementia to settle in. 

I phoned every day for those 3 weeks and was reassured that she was settled and happy.  The next time I saw here, she said “Thank goodness you are here.  Don’t leave me with these old people again.  Please take me home!”  Home for Grandma was comfort, familiarity and where she felt safe.

I couldn’t take her home and I kept being told she will be OK, don’t worry!  Every visit until the day she died I would leave, sit in my car and cry.  The feelings of loss, guilt, worry and total loss of control would swirl around my heart as my head would say “it’s for the best, at least she is safe, fed and warm!” All human beings need to feel of worth and have fulfilment in their lives; that should have been her package of care. My Grandma’s life  had become a series of tasks and she had to fit into the running of the home – her day would have to be on someone else’s terms.

On one occasion, I noticed that Grandmas wedding ring was no longer on her finger.  The manager informed me that this was just one of those things.  She said “residents lose weight and rings fall off”.  It was taken as common place for wedding rings and teeth to go missing and to wear other people’s clothes.

Despite this I am very thankful for the ten years that Grandma lived at the home as there was no alternative for us. I know from my own experience to be a care worker you have it in your heart to want to make a difference to the lives of others.  The care system does not plan to harm people with dementia but it does because it expects them to fit into our way of DOING care.  It doesn’t make sense and for my Grandma who was never a conformist she wasn’t going to be any different in dementia!

As a family we found it unbearable to see her distressed and no one gave us any clues on how to cope.  We wanted to be involved, to share our memories of her and to help plan her future. The manager told me to go and live my life and that is what I did.  I visited as much as life allowed.  I got married and had two children.

In the ten years that Grandma lived in the home there was a noticeable change in the care of people living with dementia and I have learnt so much! When my Dad had asked to put up some pictures in Grandma’s room back in 2002 he was told “no” because of “health and safety”. In later years we were encouraged to bring in photos and display them in the home.  I really enjoyed putting our family’s photos into frames and felt proud to put them in Grandma’s room.

For me, good dementia care is about connecting with someone, nothing fancy, just being with them in that moment.  Learning from this, I made sure that every visit to Grandma was a connection.  My children would sing to her and we would talk about whatever subject she wanted to in whatever reality she was in at that time.

Grandma died of dementia last year and we miss her very much.

As my Grandma’s life has ended my Mum’s journey with dementia has just began.  She is 65 and has a diagnosis of dementia and hydrocephalus. Grandma’s experience taught me so much about dementia I refuse to sit back and let my Mum experience a loss of self and worth to a world that neglects the human experience of dementia. My children are learning about their Grandma. We describe Grandma’s brain as a little bit broken and are open to their questions that help them understand that repeating yourself is helpful if someone has difficulty remembering.  My 6 year old says “Dementia is just part of who Grandma is; she is good at cuddling that’s what is important!” What more can I say?

Suzy Webster. @suzysopenheart

Current work
Freelance dementia trainer for My Home Life Cymru.
Butterfly Scheme Carer Speaker.
Expert by Experience for Age UK.
Member of United Carers Dementia UK.
Volunteer project coordinator that involves the local community in the life of a local care home.
Co-facilitator, Alzheimers Society, Singing for the Brain.
Scheming with Sarah Reed! @SarahReed_MHR:  Sarah Reed wrote another great blogpost in this series.
Dr Karim Saad wrote about the importance of raising awareness of dementia among school children