Watching The Lights Go Out

Recently I have been sent a review copy of Lucy Whitman’s new book “Telling Tales About Dementia” where Carers of those experiencing dementia share their stories. This book with such personal stories, challenging and distressing, touching and moving has prompted me to write about this subject close to my heart.

The challenge of Dementia for a family member cannot be underestimated. When we are young we look to our elders as the fount of wisdom and knowledge but what happens when the person who has been your example begins to disappear before your eyes. They look the same, they sound the same but they are noticeably changing. It is like watching the lights going out in a building one by one, one room at a time, one floor at a time. This is the lasting image I have of watching a person begin to suffer from Alzheimer’s and the progressive development of the condition over a number of years.

The initial onset can be gradual and unnoticed by those around, especially those who live with them and see and speak to them each day. The changes are slight but cumulative. Over time the changes become more noticeable especially if there is a gap in them being seen.

It is one thing finding it harder to remember names and places from a memory bank of the accumulated information of a lifetime but when a person begins to stop taking in new experiences and places it is like a computer memory reaching capacity and saying “no more space.” Individuals are often bright enough to learn to compensate for what is happening and find ways to cope even if there is no real recognition of something overtly being wrong. It is possible to meet a person suffering from the early stages of dementia and never realise anything is wrong, but for their loved one there is the sure and steady decline.

It is often said that old people talk about the “good old days” but at times this will not just be reminiscing rather a reflection of the decline of their ability to remember the hear and now and in their mind they are increasingly living in the past. The memory card is not just at capacity but contracting in space progressively backwards in time.

The challenge is when to seek help. Who is it that identifies that it is dementia and not just ageing? Some GP’s have regular check-ups for the senior members of the community and these can trigger a response, others may have another health or social care problem but for a healthy individual it may take a relative or friend to bite the bullet and take some action, risking the wrath of the person – albeit it is possible they may not remember after the initial realisation.

Medication is possible but it is not a cure, it can slow the deterioration and improve the current quality of life but the disease is unabated and will continue.

At times there will be apparent sudden changes when there seems to be sudden deterioration but this could just be the point when the final light goes out on a particular floor of the inner person or the shutdown of a section on the memory disc.

The personality may continue to be seen but step by step there are changes. The person finds it harder to read, the birthday cards are not sent, the pivotal person in family news ceases to remember any of it and eventually even who is who in the family. It is truly a gradual closing down of the internal systems; the lights are gradually going out.

Yet, once in a while there is a spark, a flame of the person breaks through. Something is said or done that triggers a response and a glimpse of the “real” person shines out.

Many a loyal Christian ceases to go to Church, as they cannot concentrate, half hour talks are meaningless – they cannot even remember what was said a minute ago. However, they are still spiritual beings and they are still a living child of God. So how can we reach in to the inner being? The key I have found is through music. Many churches focus on new and modern songs whereas for those with dementia I have found the old hymns and choruses to be meaningful. An otherwise withdrawn group in a nursing home can come alive with choruses and hymns that they knew when a child, they sing along and their faces light up.

Recently I played a CD to a person who had owned it for a while but did not know how to use the CD Player and as soon as the music started they became animated and sang joyfully along, the music brought out something that was deeply buried within severe dementia and momentarily we saw something of the person we once knew so well.

Not everyone relates to music, some relate to poetry, others to Bible readings, others still to stimulation of other senses, but wherever a person is in the stages of dementia we must never forget they are dearly loved by God and are precious to Him.
 

Jonathan Clark, 06/10/2009