John Sprange's Story

Speaking Out about Dementia

I have cared for my 94 year old father since he was diagnosed with Alzheimer's four years ago. He is fiercely independent, good-natured and until recently lived on his own in a flat overlooking the railway into Euston station. He took great delight in watching the trains pass by, which he has done for most of his life.

He is annoyed by his memory loss, occasionally tapping his temples and saying ‘My memory's like a sieve'. I have tried to care for him by maintaining him in his own home, though at times I have felt isolated and invisible in this role. My efforts to wrap him in an unseen security cloak and support him living at home on his own took time away from my family. My working week was interrupted as a series of health issues came to the fore and the ‘spider's web' of care arrangements broke down, and I needed to act at short notice. I am self-employed and in order to support him I ran the risk of becoming unreliable in my work.

As time has gone on I've shared my experiences at carers groups and realised that I am not alone and that there are carers in more difficult situations, many older, in poor health and less willing or able to speak out.

As I became confident as a carer I started to use my experience to contribute to training sessions run by Dementia UK. I was able to talk about caring for my father and give the students an insight into how my specific knowledge of my dad and his history shaped my care for him, enabling him to be reasonably engaged and content.

Locomotives and railways still give my dad a buzz. His recall of his early days as a trainspotter at Euston run through his fading memory like letters in a stick of rock. During these sessions I have been gently questioned by an experienced course leader and been able to show that a personal theme is a key to maintaining my dad, or any loved one's, contentment wherever they live. It is a personal contrast to the rules, process and tick boxes that care home workers have to comply with, perhaps at the expense of the direct contact that everyone needs.

There are many opportunities to use your experience as a carer and have your say. I've also talked to postgraduate psychology students to illustrate the affects of dementia and to encourage them to work in this field. I related my experience of my Dad's dementia as a disability, which is how I see it in its early stages. I find it interesting to see what my dad will remember, prompted by a familiar location, event or photo. These have been useful sessions with attentive audiences who are interested in what you say, ask intelligent questions, and hopefully gain insights that will benefit future dementia patients.

As his dementia has slowly progressed as a carer I have had to prepare for his future, considering his wishes. I have held a copy of his living will for many years. I spoke at an End of Life care conference. This dealt with the early preparations needed to ensure wishes are to be fulfilled. My personal experience and emotional connection with my father's care was valued by an audience of Care professionals who see the subject in terms of procedure, statistics, ethics and costs. By listening to a Carer they are reminded of a family's needs and wishes and can include them in their end of life Best Practice procedures. Taking the time to consider what you will say has helped me to begin to prepare for yet another difficult transition.

Contributing to all these sessions has helped to remove the feeling of invisibility and isolation that I felt initially, following my dad's diagnosis. It is also a useful outlet for my knowledge of his dementia that I have observed from my parallel track. It has given me access to dementia care professional's insights on care homes and their operation, and has helped shaped the way I eased my dad into a care home. It has not been easy but does mean I am able to address other aspects of my life.

For all the promise of Carers and delayed Dementia strategies and the expertise that is always ‘about' to help, it is the family carer's love that ensures the person's well being for the majority of the time. If they are moved to a care home it is the family carer who holds the key to their contentment. So we carers should speak out so our hard won experience can inform the caring professionals and the public.

My dad is now in a care home. I notice the staff are beginning to use their own steam train experiences to engage with my dad. Who knows he may yet make that trip to Venice on the Orient express with the care home manager!

John's father is pictured above on a locomotive on a family day out. Photo courtesy of John Sprange.