One of the key elements in caring for someone with dementia is understanding that they experience a different reality, especially as the condition progresses. For instance, it's not uncommon for someone with dementia to forget about the death of a loved one or their age.
So, what should you do when your loved one’s reality isn’t true reality? Is it OK to lie and “play along” or should you always tell the truth? This article will explore when it is okay to lie, how to lie, and how to overcome the guilt associated with lying.
Why people with dementia ask tough questions
People with dementia tend to ask questions that give you some insight into their reality. They may ask when a deceased relative is coming to visit or who you are. But responding to these questions isn't always easy.
Sometimes it's acceptable to lie versus telling the truth. But how you respond will impact your loved one and the relationship you have with them.
Importance of understanding your loved one’s reality
Research has determined that difficult questions arise when someone with dementia is living in a different reality. As the condition progresses, the differences become more apparent. It's not uncommon for dementia patients to:
Behave as a younger version of themselves
Have delusions
See things that aren't there
Have unfounded suspicions
It's important to understand that your loved one's beliefs and reality have meaning to them. You don't want to dismiss them or belittle them in any way.
If your loved one asks for their mom or dad, they may simply need to be comforted. Sometimes these questions are a cry for help or a coping strategy.
When it’s okay to lie
In the world of dementia, truth and lies aren't black and white. Some situations call for distraction while others require full on lying. While no one likes to lie to a loved one, in some instances, it's the best option.
It's acceptable to lie to a loved one if all other avenues would cause significant physical or psychological harm. This is known as a therapeutic lie and should only be used when absolutely necessary.
But this begs the question of figuring out when a lie is therapeutic versus when it isn’t.
At the same time, some people consider injecting their own reality into their loved one’s reality. However, this should be avoided as it can cause unnecessary stress and strain for your loved one.
While your loved one may be asking for their deceased parent on a daily basis, at no point should you tell them that they have passed away.
The better option is to embrace their reality.
Try to "Embrace Their Reality™" instead
Caring for someone with dementia is tough. Having to respond to questions that contradict your own reality is even tougher. Instead of taking the approach of telling the truth or lying to them, it's best to simply "embrace their reality™". This is a phrase and methodology trademarked by Rachel Wonderlin.
Instead of framing the situation as a “lie”, consider it entering your loved one's reality. If it's true for them, it's true for you. By entering their reality, it becomes much less stressful to figure out when to therapeutically lie or when to come up with a story that contradicts your loved one's reality.
Adapting to your loved one’s world instead of trying to keep them in the “real world” is the best avenue to take. Your reality is beyond your loved one’s comprehension. By entering their world, you can validate their worries and reassure them that everything will be okay.
Though it can be hard at first, embracing your loved one’s reality benefits everyone. It takes the burden of lying off your shoulders while also minimizing undue stress for your family member.
Tips for caretakers
Caring for someone with dementia isn’t one-size-fits-all. Whether you choose the route of therapeutic lying, or if you prefer to adapt to your loved one’s reality, it there are some strategies to consider.
·Be empathetic – Rather than arguing with facts, listen and read into the emotion that is driving your loved one’s thoughts and behavior. Validating it works much better than other avenues. For instance, if your loved one is agitated, acknowledge those feelings, even if they root cause of said feelings is not.
Try changing the subject – Instead of lying or arguing with your loved one, change the topic. Redirecting to something else can help to lower stress and tension in the room.
Don’t force your reality onto your loved one – Trying to force your loved one to see things your way, in your reality, is never a good idea. In late stages of dementia, your loved one is detached from reality. Trying to make them see things your way will only lead to more agitation and suffering.
Let your loved one be in their own world – If your loved one isn’t in danger, let them live in their own world. Accepting their reality, even when it’s vastly different from your own, is usually the best way forward.
How to overcome the guilt associated with lying
Caregiver guilt is unavoidable, especially for those on the dementia journey. It’s especially hard to cope with the guilt of lying to a loved one, especially a parent.
Don’t look at it as lying
So many caretakers get stuck on the idea that they’re lying. But in reality, what you’re really doing is adapting to their reality. Embracing your loved one’s reality, no matter how far it is from actual reality, isn’t lying. It’s the best avenue for keeping your loved one calm while finding ways to better understand them.
Take care of yourself
During these tough times, one of the best things you can do is to care for your own mental health and physical wellbeing.
Being a caretaker is stressful. And while it’s all too easy to put yourself on the backburner, you need to be at your best to provide the best care to your loved one. Carve out some time for self-care by:
Taking a hot bath with your favorite book
Listening to relaxing music
Spending a day at the spa
Meditating and/or yoga
Spending time outdoors
Find tools like RecallCue Day Clock that help you be a better caregiver.
Taking care of you enables you to best take care of your family member.
Talk about it
If you’re struggling, don’t hesitate to get help. Whether you talk to a family member or a therapist, keeping things bottled up inside does more harm than good. Find a trusted source that you can talk to so that you can work through guilt and other things that you may be experiencing.
Final thoughts
Caring for a loved one with dementia is a self-less task. It’s also one of the hardest things you’ll ever do. As your loved one’s disease progresses, the best way forward is to simply embrace their reality as your own. Though hard, adapting is the best way forward for the both of you.