Ron & Jan Inman at their wedding blessing in 2012, where they renewed their 43-year-old marriage vows. Ron had been diagnosed with Parkinson’s dementia.
It was New Year’s eve at the Ilford Palais. As midnight struck, a young man asked a girl to kiss him, once for 1966, and then again (cheekily) for 1967. And that, as 64-year-old Jan Inman tells me, was how it all began.
The story of Jan and her husband Ron runs to 48 years; it’s one of mixed fortunes and hard work, of ill health and injury, of four homes, two children, a marriage and a blessing. But most of all, by far – by a long and winding Essex mile – it’s the story of an enduring love that weathered everything life threw at it, including, in its final years, dementia.
Talking to Jan, as I did in the difficult, limbo days before Ron’s funeral, is like talking to the 16-year-old she was when she first met him in the dance hall. She’s full of enthusiasm, brimming with details – prior to that double kiss they danced to the Walker Brothers’ “The Sun Ain’t Gonna Shine Anymore” (how poignant that title seems right now) – and so unutterably proud of Ron, who died on 30 December aged 66.
“It was true love, and I realise how very, very lucky we are – “ She pauses a moment before correcting the tense. “I still can’t get used to the fact that he’s gone”.
Jan describes caring for Ron when he succumbed to Lewy Body dementia as a privilege and says that while nursing him in the last three months of his life she fell in love with him all over again.
Few of us possess Jan’s gift for caring. Shortly before the two of them married in 1969 she took a job as an orderly at Dagenham hospital. She lasted one day before deciding that she wanted to look after everybody and instead became an auxiliary nurse or care assistant.
“I absolutely loved it – it was the most rewarding thing I’ve ever done and it held me in good stead because all those years later I was so well placed to look after Ron. I was always grateful for that”.
Yet even this big-hearted woman found dementia hard to cope with. Her account of Ron’s illness is one of mistakes and well-meaning but misplaced advice that was only saved from the sort of ending neither of them wanted by the arrival of an Admiral Nurse, a specialist dementia nurse who, to quote Jan, “changed everything”.
Before Sam Taylor’s timely intervention, the common factor in this thread of the couple’s tale was a lack of detailed knowledge of Ron, of his primary carer Jan, and of their devotion to each other – a lack, in other words, of person-centred care.
The first inkling that things weren’t quite right appeared in 2010 when Ron, a usually confident man, became stressed driving. Then came the nightmares and delusions, initially diagnosed by their GP as a nervous breakdown, but which Jan knew, “just wasn’t Ron”. Months later, a neurological consultant confirmed that Ron, as Jan by then suspected, had a form of Parkinson’s disease.
At this stage dementia wasn’t mentioned, but after a year or so her husband’s worsening cognition began to worry Jan so in 2012 she took Ron to a memory clinic, where he was diagnosed with Parkinson’s dementia. When, a few months later, he contracted a urinary tract infection, his GP prescribed antibiotics, which had what Jan describes as a devastating effect on Ron’s brain.
“He went mad. He maintained a German accent for four hours, marching up and down the hall and he became incontinent. It was awful. Eventually I called an ambulance and he was taken to hospital”. Following this traumatic episode Ron was finally diagnosed with Lewy Body dementia, a condition which Jan, alert to every little change in her husband’s condition, had already researched.
Jan was exhausted. To make matters worse, a teenage injury to her spine had come back to haunt her and she was in almost constant pain. Following two months of virtually no sleep she made a decision that she bitterly regrets. She listened to those she assumed knew better than her and placed Ron in local residential respite care.
“I’m so cross with myself. It was well-meaning advice but it nearly killed me. It certainly wasn’t respite. I couldn’t sleep for worrying about him and in the end I brought him home”.
But being the prime carer for a person with dementia – however much you love him and want to be with him (or her) – is hard. Without sufficient help, both emotional and practical, it’s impossible. “My mood started to plummet,” says Jan. “I’d lost my confidence and could see no light at the end of the tunnel – and I was angry, constantly asking myself, ‘Why him? Why us?’”
It was at this critical juncture, with Ron needing more help than his wife alone could provide, that Sam Taylor was introduced to them by the local dementia service.
With Sam’s help, Jan was able to formulate an action plan and work her way through the complexities of looking after her husband, including hiring agency carers, linking up with district nurses and, in the final months, turning to St Helena hospice in Colchester for the vital support that enabled Ron to die in his own home in Clacton with Jan’s arms around him and his family beside him.
In one sense, this is the end of a remarkable story – but then again, perhaps not. For Jan is nothing if not a carer and sharer, and aware of how invaluable an Admiral Nurse proved for her and Ron, last year she set up an online petition calling on the Government to recruit and fund more of them. The petition is still open.
Jan is also a Purple Angel ambassador, helping to raise awareness of, and reduce the stigma surrounding, dementia through various different community and fund-raising activities.
It’s a mark of the powerful, positive impact that Jan and her husband had on all those who met them that no fewer than nine of Ron’s carers (many of whom nicknamed the couple Mrs Mills and Boon) will be at his funeral. Victoria Lyons of Dementia UK told me that she’d like to clone Jan, such was her undiminished spirit and dedication to supporting the charity even in her toughest moments – and there were more than a few.
I’ve commented before on how our attitude to those with dementia – how we view them, and the care and support we provide to them and their families – reflects on us as a society, shining a bright, unforgiving light on our humanity.
Talking to Jan in the rawness of her grief – her choice, not mine – I was struck by how dementia, ugly as it is, can take and take, yet also give. It shows, if not the worst in us, the lack in us. But it can also reveal the best in us; to me, Ron and Jan’s story does just that.
Dear Pippa thank you so much for the beautiful way you have told our story, I am sure it will help my petition and Dementia UK , but most of all I hope like you it will Spotlight Demtia and what the goverment national health service and general public need to realise . We need to tackle this now before it becomes a disgrace to how we treat very vulnerable people and their carers. And stop the discrimination , this is the 21st century ignorance and stigma still abounds when it comes to dementia.
With thanks
Jan Matt and Lorraine Inman
It was a great pleasure Jan, and as you can see from the responses, your story has touched a cord. All the very best to you and your family for next week, and in the future.
Thank you for linking me into you blog Pippa Kelly and its so lovely to read about Jan’s Story. April xx
Thank you April. Jan is an extraordinary woman.
Thankyou Jan so much for sharing such a personal story with us. Thank you Pippa for your time in writing. Your love story will help someone today and prepare someone for the future. Your courage in grief will change someone’s life as your love for your husband already has. Thank you is not enough.
Pippa, this is a very inspiring story, beautifully told.
The detail you describe of how Ron and Jan met highlights, what should be an obvious fact, in that we are talking about two human beings’ lives.
The difficulty anyone faces when trying to care for someone at home is to battle through individual services which each have their own specialisms rather than a coordinated approach which centres on the person or people at the heart.
I know from my own past experience of battling to get effective support when my mother was dying of terminal cancer and how those last few months were made much worse by endless battles and worry.
The toll taken by carers who care for years on end is immeasurable and any future improvements must involve and support them too.
Many thanks Christine. A carer’s burden is indeed difficult and sometimes almost unbearably challenging, and we all need support. Jan is a very inspiring individual.
Pippa – as always so beautifully written.. and Jan, you should be so proud of yourself and how lucky you both were to have each other. A real Mills & Boon love story. Thankyou for sharing – I learned thru Norm about your loss. It feels like I belong to a huge loving caring family. My thoughts are with you. Hugs from Brum x
How lovely Kim, thank you. I will make sure that Jan reads your comment.
Dear Pippa,
Thank you for sharing this story with everyone. It is beautifully written and strikes a cord with all of us who have been caregivers at some point in our lives. My heart aches for Jan as she travels one of the hardest times in her life. Loosing the love of your life is hard!
My best wishes go out to Jan and her efforts to make a difference for all people with dementia and their caregivers in the UK.
Warmest Wishes,
Deborah
Many thanks Deborah. Jan seems to be a really wonderful woman.
Dear Deborah thank you so much for your kind thoughts I am glad you liked our story told beautifully by Pippa , I wish you luck in all you do.
Love Jan.x
Thank you Pippa for sending this to me.
You write so well and sensitively, you had me in tears – I feel I know Jan and Ron through this. It is so important to know that everyone’s story of living with dementia is a personal and very individual one and that help and understanding is vitally important. We certainly don’t provide nearly enough support in caring but I’m glad to see that awareness is on the increase. There is so much more than 25 years ago when I was first involved in dementia. Writing articles like this is a big help in telling us about the work so many “ordinary but extraordinary people” are doing in support of people living with dementia. I hope these grass-roots movements will nudge the government to invest much more into this essential care.
Thank you Laura. I set up my blog partly in frustration that so many of the articles you see in the national press (where I also write) focus on the things that go wrong. Amongst the negative, there is also so much strength, determination, compassion and passion among people to help those with dementia. I’ve been delighted at the response to my posts and sometimes, as in my previous post about the care farms, they even provoke positive action. Two farmers have come forward to welcome groups of people with dementia to their farms.
HI Pippa,
Thanks for tagging us(FIT Kits) on Twitter so we could find and read this.
What strikes me is your statement above:
I set up my blog partly in frustration that so many of the articles you see in the national press (where I also write) focus on the things that go wrong. Amongst the negative, there is also so much strength, determination, compassion and passion among people to help those with dementia.
This is so much what we feel! So glad to find more people who are starting these conversations. We spend our time creating and sharing resources to help people experience more of these “good” moments and remember that the person with dementia is still a person first.
Thanks much!!
Kelly
Dear Laura I am glad you liked our story beautifully told by Pippa thank you for your kind words .
Love Jan.x
Jan, as little as I know you and Ron, I can only say how sad but uplifting this story is. Having lost my partner of 28 years, 7 years ago I can so much sympathise but his was an accident and I feel your sad loss must in some ways have been so much worse. Sending love to you and strength to you for the funeral day. I got so much help from a local bereavement group. Its not for everyone though.
Viv x
Dear Viv thank you so much for your kind words , I do hope you are in a better place now after your sad loss .
I am now very much in the grip of grief and struggling at the moment without my darling Ron.
Love Jan.x
Hi Jan, this is a true love story, as i was reading i didn’t realise that i was crying. We have seen you both & knew how much you botht loved each other, & it was a pleasure to meet you and Ron. Oour best wishes to you. Love & xxxx