A few days ago when out walking Bert, I bumped into someone I hadn’t seen for years and the two of us stood chatting for a good ten minutes or so before resuming our paths with our respective dogs – hers, a lovely black Labrador called Rye. Our exchange, though, wasn’t the normal stuff of middle-aged mums in our neck of the woods – namely, children, schools, university choices and the like – but dementia.
Jane, a secondary school teacher, is 56. My daughter Emily and Jane’s youngest son went to the same primary school many years ago and when the children were little, Jane and I attended the same weekly conversational French lessons. I remember her as conscientious and intelligent.
I’m sure she still is. But hers is a very different life now. Four years ago when Jane’s husband Phil was 62 he was diagnosed with frontotemporal dementia. As we talked in the spring sunshine, the dogs tugging on their leads, the pain, guilt, anger and sadness, the sorrow and loss that has subsumed her life in the last few years spilled out of her.
As so ever with dementia, the diagnosis, when it finally came five years after Phil’s behaviour began to change, was a massive relief. I hear this over and over again; yet those whose lives have not been touched by this most feared of conditions may find that odd. How on earth could diagnosis of such a dreadful thing produce relief?
To hear Jane’s story is to know why. And for Dementia Awareness Week – in which an Alzheimer’s Society’s study shows that 56 per cent of people put off seeking a dementia diagnosis for a year or more – I’d like to share it with you.
That Jane, a local acquaintance I happened to bump into, is prepared to let me do so is a mark of the woman. She wants to spread the word of what dementia is, to let others know how it affects, not just those who have it but their loved ones, to advise anyone anxious that someone for whom they care may have the condition to see a doctor and push for a diagnosis.
Jane and I followed up our chance encounter with a phone call and she told me that in 2007, aged 57, her husband lost his job as headmaster of a large comprehensive school in Westminster, where he had worked for 30 years. So when he became unusually apathetic – sitting in his chair and watching TV for hours on end – she assumed it was depression brought on by shock.
“I’ve learnt that there is always a need for the family carer to look for an explanation as to why something has happened – you hang onto your reason, you say, ‘Oh, that’s why he’s behaving so oddly, he’s depressed’”.
For some years Jane struggled on. Her two youngest boys were living at home, and she says she feels guilty about not doing anything about Phil for so long. Guilt, as anyone with a loved one with dementia will tell you, goes with the turf. I remember this well: I frequently shouted at my mum for being unreasonable to dad, only to realise years later that she wasn’t being cantankerous. She was ill; she had vascular dementia.
This blurring of lines, this lack of clarity, perspective and knowledge, is a strong thread in the lives of those caring for someone with the condition. It adds to the muddle and confusion, the angst and worry and guilt.
In July 2011 an incident prompted Jane to act. Her husband attended his best friend’s 60th birthday party alone because she had been invited to her good friend’s wedding on the same day. Soon afterwards Jane received a letter out of the blue. It was from Phil’s best friend’s wife, writing to ask if Jane was okay and to tell her that Phil had behaved strangely at the party, where he had talked “gibberish”.
“She is an ex-nurse and she mentioned the Alzheimer’s word. I thought, ‘Thank God – this is more pro-active’”, Jane said. She later went on to make an appointment for her husband to see his GP.
In retrospect, Jane realises that she didn’t act earlier because there had been no one else to witness the changes in Phil and provide another perspective. “I was coping with a deteriorating situation, adapting to the situation, finding resources to cope. And my boys – all boys, I think – tend to keep quiet”.
The following spring Phil was given the diagnosis which, says Jane, was an enormous relief. “It all made sense then and I knew that Phil wasn’t withdrawing from me or the boys, he had dementia. There was a reason for his behaviour”.
But just weeks before the clarity provided by a diagnosis, there was to be one more very frightening episode. In February 2012 the couple and their two youngest sons were staying in a hotel in Bournemouth. Phil was already displaying habitual, repetitive behaviour, so when he said that he was “going to get the paper” (one of his constant phrases), it didn’t ring alarm bells.
Four hours later, after he had failed to return, Jane phoned the police, who took the disappearance seriously when she told them that her husband was due to have a brain scan in a few days. Phil remained missing for 48 hours and the police told Jane and her sons to return home.
“Driving home I was planning Phil’s funeral in my head and working out how I could explain to everyone that I had lost him,” Jane told me. “I knew he was depressed and I was convinced he had walked into the sea”. I can only imagine her silent anguish as she sat, wracked with grief and guilt, hands on the steering wheel, staring ahead, driving her boys back up to London.
For the first time, as she told me this part of her story, Jane’s emotions momentarily got the better of her. Her tears were not for herself, of course, or even her husband. Being a mother, they were for her son, who had been with his father when Phil left the room. “I simply couldn’t bear my son blaming himself for letting Phil go out of the hotel room. It would be so, so unfair,” she told me, her voice cracking.
In fact, half an hour out of Bournemouth Jane received a phone call to say that Phil had just walked into the police station. She turned tail and headed back to be confronted by “a changed person”, by a confused, dishevelled man who had spent two nights on a park bench. “We were sent back to London with someone who – to me – had come back from the dead”.
A few months later, following the brain scan, the diagnosis was made. Now, four years on, Jane is no longer a part-time teacher but a full-time carer. “I have become the caretaker of Phil’s body. I meet all his needs, however intimate, however irrational they are. I care for him”.
Jane is so brutally honest about what it is to live with and care for someone with dementia that I am humbled by her confidence in me. I know she’s telling me because she wants to let the world know what it’s like. I want to do her justice, to convey her message as best I can in this of all weeks.
At the end of our conversation Jane describes “the very slow creep” of losing her husband. She compares it to watching a pilot light go out, and as I put the phone down my heart goes out to this former teacher whose French homework was always so much better than mine.
At Chilcotts law our Anne Reed is able to help and advice in the specialist area of dementia care and associated funding requirements for such care provision. Please call Anne Reed on 01822 612535.