A life story interrupted
A person can tell their story and communicate their perspective until dementia begins to interrupt. They then develop memory difficulties, losing the ability to communicate normally and function as they once did. Gradually the story text appears to thin out. But he or she is still there; still doing their best to live their life and communicate their feelings and needs – they are the person they have always been.
To know, understand and react appropriately to their changing reality we need to adjust how we think and respond. This means being able to interpret changes in how they communicate: usually using more and more non-verbal methods. Frequently this behaviour may be seen as ‘difficult’ or as being ‘resistive’. But, if we are able to recognise and see the actual person, it is easier to interpret the meaning of their reactions and see the text of what might appear to be blank pages. That way we avoid becoming wrapped up in the role of being a carer.
Seeing only the condition
As the person becomes less able to communicate in the normal way it can be very easy to adopt an attitude of relating to them as if they are the disease. This is probably done with great efficiency and care: making sure they get up, are well clothed, stay clean, get their meals, are given their medications, have a safe environment and so on. You become wrapped up in the business of doing tasks and being a good carer. Any ‘difficult’ behaviour is blamed on the condition.
This can also result in treating the person as less than human, ceasing to treat them as an adult and contribute to ‘problem behaviours’. The behaviours usually arise because their viewpoint is not seen and their needs are being ignored. They
quickly begin to feel they are not wanted or needed and that they are a burden.
Seeing the person
To be able to interpret and understand their behaviour we need to continue seeing the person. Their reactions will always have meaning and are indications of them remaining true to themselves, who they are and their beliefs. They will also be influenced by good and bad experiences in their past. A person may have a belief that it is not right for a son or daughter to help them bathe and react emotionally or physically to being bathed by them. Their objections may be inconvenient but it is the individual responding in the only way they can.
See the world from their perspective
The ability to continue seeing the person resides in being able to project yourself and see the world from their perspective. Carl Rogers* stated: ‘The best vantage point for understanding behaviour is from the internal frame of reference of the individual himself.’ But how do you do that?
Compiling a life history book
This is a good way to go about increasing your insight and understanding. All family members and friends can participate, providing photographs and anecdotal material. Have a timeline which includes when they:
· were born
· went to school
· left school,
· started work,
· got married and other major life events.
Do this as early as possible, ideally while the person is still able to remember most things. While doing it, note:
· Their likes and dislikes
· Their hobbies and interests
· What their major values and beliefs in life are
· Their regular habits and routines
· Things they are very private about
· Idiosyncratic behaviour they maintain
These will influence their behaviour later. If you try to get them to do something that is not true to themselves they will likely react. The person still exists and will do their best to protect and maintain their beliefs and values.
The benefits of a life history
Compiling a life history book helps in a number of ways. How it is done is really not important.
· Putting it together will give you many insights into the person’s life – even through you think you know your loved one well you will still make surprising discoveries.
· At later stages of the condition it will be invaluable for use to help the person recall their own history, to prompt discussion and aid orientation to the present. For instance, someone who thinks he or she has to go to work can be shown photographs of their retirement party and the holiday they had to celebrate, to help them orientate to the present.
· It will be a valuable tool for anyone else who has to take over caring for them.
· Most important, it will help you to keep seeing and focusing on the person, not the condition.
Seeing your loved one’s viewpoint
Probably the best way to show how seeing the world from the person’s viewpoint helps to understand their behaviour is through examples:
‘My mother, 96 years of age, lived in a nursing home. My nephew, who was 20, had a flat near the home and would frequently call in to see her. Invariably she thought it was me and responded to him as she would to me when I was about 20 years old. At first he tried to correct her. She became confused, angry and upset. He, hurt because she wouldn’t accept who he was and not wanting to continue causing her stress, said he would stop seeing her. After talking to him about seeing it from my mother’s perspective he stopped trying to correct her. She then smiled at my nephew and enjoyed his visits.
Her shorter term memory had gone so she remembered me up to the time I was about 20 years old. She had sight problems and my nephew bore a resemblance to me at that age, was about the same build, had the same colour hair and his voice sounded similar. When I - now in my sixties with grey hair, a plump figure and wearing glasses – visited she rarely seemed to know who I was and frequently treated me as if I were a stranger. She was still the same loving person but from her perspective, because of loss of memory, she remembered, saw and thought of me still as a young man. Although a small deception, it allowed her to, within the reality of her situation, enjoy my nephew’s visits.
Being a detective
Seeing and understanding an individual’s viewpoint and behaviour often entails being a detective. You may think you know your loved one very well but there will be things which have happened to him or her that they may not have told you about and influences their behaviour.
For example: in an attempt to give my sister-in-law some respite I have been in the habit of taking her husband, who has dementia, fishing. It is something he has done regularly most of his life. He isn’t able to fish anymore and his conversation is incoherent but he is quite content sitting quietly by the river with a rod in his hand. On one occasion he was incontinent.
Luckily, I had taken the precaution of having a spare track suit bottom in the car. I took him to a nearby public toilet. Inside one of the cubicles I began helping him undo and take off his trousers. Immediately he yelled out, struck me hard in the face, pushed me away and started to cry. It was only with great difficulty I was able to get him into the track suit. Later, the incident forgotten, he settled down again.
What had I done to initiate his reaction? At home he was regularly helped to dress and undress by his wife and son and, occasionally, by me. I began to make inquiries from his wider family. Some weeks later his brother gave me what I thought was a rational explanation. When in his early teens, my brother-in-law had been abused by an adult in a public toilet. Ashamed and wanting it to be kept secret the family didn’t tell anyone. He had not even told his wife.
Triggered by the location and what I was doing had he thought I was about to abuse him? Very likely. This was the person, still there, reacting in a rational and understandable way.
On future fishing trips I avoided him reliving the pain again by taking along a fold-up beach screen. If the need arose again to change his clothes, I could erect this by the river to maintain his privacy.
The advantage of seeing the text
Continuing to see the person, not the condition and their perspective in this way helps enormously with:
· Being able to deal with your own emotions
· Devising ways of meeting your loved one’s needs
· Respecting their reality so that they continue to feel needed and wanted.
· Constantly reminding you that the person is still experiencing life - the story is still unfolding - and helps you see the text
· Avoiding becoming locked into merely doing care tasks and being a carer.
*Rogers C R (1951) Client-centred therapy: its current practice, implications and theory. Boston: Houghton Mifflin
Copyright Robin Dynes 2020