Could it be Dementia? (eBook)

CHAPTER 1

Finding Wonders in the Dark

A despairing wife said, ‘Every morning I wake up and look over and see Jack, and think of our long life together. I think how much I love him. Then he wakes up, and it’s not Jack.’ Nancy Reagan, the wife of the former US President, famously described his ten years with dementia as ‘the long goodbye’. Someone else has said of caring for someone with dementia, ‘Two of you make the journey together, but only one of you comes back.’

It can be heartbreaking for relatives to watch the progress of dementia, as the person seems to disappear and only the physical shell remains. Dementia is often called a family disease, because the stress of watching a loved one slowly decline affects everyone. And the incidence of dementia is rising so quickly that almost everyone you meet knows someone who is suffering from it. The statistics are mind-boggling.

Every year there are 4.6 million new cases of dementia – the equivalent of one new case of dementia every seven seconds.1 Worldwide there are currently 24 million people suffering from dementia, and over the next thirty-four years that number will increase to 81 million.2 On an international scale, that amounts to 1,676,471 cases diagnosed a year: around 190 people an hour. In America3 the number of people affected by dementia is expected to increase three fold in the next fifty years, from 4 million in 2007 to a total of more than 13 million. In Australia, the 2006 estimated prevalence of dementia is 1.03 per cent of the population as a whole. In the UK, at the time of writing (2007) there are around 684,000 people with dementia, and that figure is expected to rise to 940,110 by 2021, and 1,735,087 by 2051, an increase of 38 per cent over the next fifteen years and 154 per cent over the next forty-five years. It is not a new disease, but one that has been thrown into sharp relief by the rise in the number of sufferers in an increasingly ageing population. Although it affects mainly older people, there are also around eight thousand people under the age of sixty-five with dementia in the UK. It is not an inevitable part of ageing, and not everyone will develop it, but everyone will be affected by it, in one way or another.

Dementia affects one in five people over the age of sixty-five and one in four over the age of eighty, and according to government predictions, there will be 4 million people aged over eighty-five by 2051. Among them are likely to be a large number of practising Christians, for research shows that ‘people with a faith, who regularly attend a place of worship’ tend to live longer than their peers. Much excellent information about dementia is produced by organizations such as the Alzheimers’ Disease Society, Age Concern, Help the Aged and others, but it is factual, and has no spiritual context. Yet Christians have a glorious context in which to put this dreadful disease, a context which steadies us in the present and balances us in the light of eternity.

Dementia is a Latin word that means, literally, apart from, or away from the mind. It is an umbrella term used to describe the loss of cognitive or intellectual function. It is not a disease, but a group of symptoms that may accompany some diseases or conditions affecting the brain.

Every person on earth will leave this life at some point. I’ve heard people say that when their time comes they would like to die peacefully in their sleep, or go suddenly with an unsuspected illness. If we could choose the way we leave this life, I doubt anyone would choose dementia. The fear it arouses, and the pain it leaves, can be devastating. I had no real idea how deep its effects can be until I began to arrange a seminar on caring for the elderly at a national Christian conference. My contact in the host organization was a lady in her mid-thirties whose mother had only recently been diagnosed with dementia. She said, ‘You don’t get it till it hits you! We’re losing our mother, my sister and I, and suddenly we’ve become the parents. And we don’t understand what’s going on, or the best thing to do.’ As an afterthought she asked, ‘Are older people always so stubborn? Is it something that comes when you get older?’ Because her story was so typical we agreed that I would interview her as part of the introduction to the dementia segment of the seminar, but in the event she left the hall in tears before I could talk to her. I learnt more than I expected from the audience at this seminar, and their comments and questions gave impetus to the writing of this book.

Although Pilgrim Homes has been caring for elderly Christians of every Protestant denomination for 200 years, it was almost unknown at this conference – the annual conference of the Assemblies of God. It was only the second year we had attended. It was the first time we had organized a seminar there, so we were pleased and surprised to see so many delegates turn up for it. When we began to talk about dementia there were sad faces and tears, along with some audible punctuation, which I put down to the fact that this was a more expressive denomination than most. But it was the intense body language and facial expression of one listener that really caught my eye. He was probably in his early fifties, with a stocky frame, broad cheekbones, and a face set in the lines of a habitual listener. He also had an indefinable air of responsibility and authority, and I mentally ticked him as a pastor. He sat like a coiled spring, leaning forward and listening with a fierce concentration. I kept a wary eye on him because I thought he might be gearing up to ask difficult denominational-type questions (Pilgrim Homes is undenominational), but when we opened up the session later for questions and comments he left, making no comment. After the seminar, a number of people came to our stand for extra copies of the notes to take back to their churches, and I didn’t see him again until the next day, when he came along just before lunch.

Unaware of the impression he had made the morning before, he introduced himself by saying he had been to the seminar. Then he paused, seeming to gather himself before saying intently, ‘I never got over what happened to my grandma… I never got over it.’

There was no need to tell me that she had died with dementia, and no need to explain the process or the pain. The exhibition seemed to disappear and we were caught up in a conversation without words, just speaking with our eyes: his deeply grieving, mine empathizing. We stood in silence for a moment. Some communications are better without words (as Job’s friends illustrate so well), but sometimes they are expected and needed – and they have to be the right ones.

I thought, not for the first time, how important it is to remind ourselves of what we know but can forget in times of grief and strain – that God is not some distant aspiration but actually lives in us (John 14:17) and has said He will never leave us (Hebrews 13:5). He has promised that nothing will separate us from Him and His love; nothing, not even dementia. So I said how blessed he was to have had such a loving grandma in the first place, and (knowing that she could not have been anything other than a Lois to this Timothy) we both knew she was all right, now. I reminded him that all the time she had had dementia and perhaps couldn’t communicate with anybody, the Holy Spirit was right there with her, communicating and comforting in ways we can’t see.

‘You might not have been able to see your grandma any more, but she was still there all right, and He did,’ I said.

He nodded. He already knew this, of course, but sometimes we need to hear what we know, as affirmation, from others.

The light may be off, but someone is in

I told him of the times in our care homes when, like lightning flashes through darkness, there are fleeting moments of grace; glimpses when the person with dementia breaks through and is seen again.

During a chapel service at our Wellsborough home, the manager noticed a resident, who is not normally able to remember very much at all, singing the chorus to a hymn, word-perfect and with her face aglow, lifted upwards. When the chorus began again, he looked to see if the same thing would happen, and sure enough, eyes shut again and face lifted, she was singing the words, ‘O make me understand it, help me to take it in, what it meant to Thee the Holy One to bear away my sin.’ During conversation afterwards, he asked if she enjoyed the singing and which hymn meant the most to her, but she could not remember the hymns or singing the chorus.

In another of our homes I had a perfectly ordinary conversation lasting for about twenty minutes with one of our volunteer home visitors and a resident, discussing her life before she came into the home, why she felt she had to come in, how she had managed to get a place when it was then quite full, and what she thought of living there.

As we left the room, the home visitor turned to me in amazement and said, ‘That is the most lucid Elsie has been for the past two years. She’s normally very confused.’

Unlocking confused minds

Philip Grist, a pastor who preaches regularly in our care homes, tells of an experience that radically changed his...