I remember having classroom debates in high school about whether it was ever okay to tell a lie. A few decades later, here’s my verdict: a lie can be the most virtuous thing you’ll ever do. I call it a righteous lie; others call it a therapeutic lie. I tell a righteous lie when my mother phones me in a panic because she can’t find the train station and she’s going to miss the train. I lie to her and explain that there are track works on today, so no trains are running. Her distress evaporates instantly. My mum has dementia and she is, in fact, pacing around the corridors of her nursing home. It’s little wonder she can’t find the train.
If you haven’t yet encountered dementia in your life, you possibly think it’s about forgetfulness. While that’s one element of the cognitive confusion in dementia, it’s much more than wondering where you put your keys. Dementia takes a variety of different forms, including frontotemporal Dementia, Lewy Body Dementia and more. It is also often spoken of in relation to other diseases which can cause memory loss or changes to a person’s behaviour such as Alzheimer’s disease. But while there are a variety of possible causes, the behavioural symptoms that it brings are often consistent.
Dementia forgetfulness is extreme—not the garden variety type that we all experience. My mum will ask, “What time are we leaving to go to the meeting?” She will repeat the exact words, five minutes apart, over and over again, with no recollection of having already asked the question. This forgetfulness can have serious financial consequences, as they may pay bills multiple times, forget to pay insurance premiums or go shopping day after day—spending their money like they have an endless supply. Many people with dementia seem to forget whole decades of their lives. They revert to “living” in a past time in their life, such as when they were a child, and this often goes hand in hand with not recognising their present-day family members. They might even fail to recognise their own reflection in the mirror. It is particularly difficult for someone with dementia to process the death of a loved one, simply because they keep forgetting what has happened. They may ask for their son whose funeral they attended two weeks ago, and may feel rejected and abandoned because he hasn’t visited lately. No amount of re-telling what has happened makes it become a hardwired memory—it only forces them to re-live their grief and despair for the first time over and over again. In these situations, the righteous lie may be that he is away on a holiday and will visit when he comes back.
Creating false memories
Dementia patients may also experience delusions, hallucinations and confabulations—filling in the memory gaps with made-up stories. My mum—a former English teacher—has extensive delusions. When she first moved into her nursing home, she believed she was at university, living in a college dormitory while upgrading her teaching qualifications. She turned complaining about children breaking into her room and stealing things into part of her daily routine. One morning she phoned my brother—from the landline in her room—and told him she was on the train, but she didn’t know which station they were stopped at. She also believes she is employed at the nursing home, sometimes even complaining about how much work she has to do. Once, a staff member had to “fire” her, to stop her bothering other residents in their rooms at night.
One way or another, dementia is caused by damage to the brain, so the impacts can be wide-ranging. Often times a person’s personality or a person’s behavior will undergo signficant changes. The sweetest, gentlest father or mother can become aggressive, abusive and violent. A lifelong teetotaller can insist on having a glass of wine. My mother, a strict vegetarian for around 50 years, suddenly started eating chicken at every given opportunity. Noisily wandering the house at night is common, and “sundowning” occurs when behaviours worsen in the late afternoon and evening. In most cases, the brain damage progresses, leading to other symptoms such as an inability to control the bladder (urinary incontinence), immobility, loss of speech and inability to eat.
The carer’s path
It’s estimated that currently in Australia and New Zealand, more than 1.6 million people are involved in caring for someone with dementia. Although this can be an arduous commitment, it is delivered with love. As the condition progresses, the challenges mount. Incontinence alone can require superhuman stamina to manage, prevent and clean up, especially in patients who refuse to wear incontinence underwear and refuse to shower. Dealing with falls and injuries can take a heavy toll on the carer’s physical health. Making decisions around safety, including the suspension of a driver’s license, can leave the carer with an angry loved one who sees their freedom and independence disappearing. Navigating medical, legal and financial matters is often all-consuming and fraught with frustration. Many carers have significant health problems of their own, including physical disabilities or terminal illnesses. They may be raising young children or teenagers, who also sometimes have complex issues. Many carers reach a point of physical and emotional exhaustion with their own lives, health and finances in tatters.
While government-funded or subsidised care packages and support are available, they can be difficult to access, often have long waiting times and may still not be enough.
The demands of this role are intense. At a time when carers need all the practical and emotional support they can get, they can instead very quickly find themselves isolated from their friends. Small acts of care can go a long way. If someone you know is caring for a loved one with dementia, why not gift some of your time to provide a judgement-free listening ear? Perhaps pay for a one-off cleaner; bring afternoon tea around or drop off an evening meal; play a simple board game, including the loved one with dementia if possible. Although you can’t change the carer’s situation, the impact of such kindness can make an immeasurable difference.
Dementia is just one of many circumstances that can render a person unable to make or communicate decisions about their finances, medical care or end-of-life wishes. All adults should plan ahead for such possibilities, beginning with three essential documents:
Power of Attorney identifies who will look after your finances and make your financial decisions if you become unable to do so.
Enduring Guardianship identifies who will make your lifestyle and medical decisions if you don’t have the capacity to make them yourself.
Advance Care Directive details what care you do or don’t want in end-of-life scenarios. Make sure your parents have these in place. Make sure you have them in place.
For more information on putting plans in place, see the Dementia Australia website.
What lies ahead
Pending medical breakthroughs, there isn’t a lot of good news for dementia sufferers. It’s a frightening and devastating diagnosis. Caregivers in the support groups I belong to routinely express their hatred for this awful disease. How can they weather this storm? Many carers and family members find their peace by surrounding their loved one with as much love as possible and providing them with as peaceful a death as possible. An oft-quoted mantra holds true: “They might not know who you are anymore, but you know who they are.” For my part, I also believe something more lies ahead. I believe I’ll see my mum restored to her full health again one day, and I look forward to telling her about all the funny things she did when she had dementia. I’m sure we’ll be able to laugh about it then.
Julie Hoey is a qualified science/maths teacher and librarian. She lives in Mulbring, NSW, with her husband and teen daughter.