Today we are going talk about confabulation, delusions and hallucinations in dementia and Alzheimers and why our loved ones lie. PLUS tips and ideas for how to protect them and ourselves as caregivers when these stories get out of control.
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Are They Really Lying?
So first off, let's look at what we are really talking about today!
There are three types of “lying” that are generally recognized about Alzheimers and Dementia patients. When I started this post I had no real knowledge of the differences and was super mixed up about which Mom was doing.
As a caregiver, I see a lot of different ideas thrown around in support groups and really wanted to dig down and figure out what was going on.
“Confabulation is a memory error defined as the production of fabricated, distorted, or misinterpreted memories about oneself or the world, without the conscious intention to deceive.” source Wikipedia
What comes to mind is Brian Williams who had told stories about being on the front lines of a battle, when it was found out later that he was not there. He wasn't lying, he had just “remembered it differently” than it actually happened in reality.
Hallucinations are when they “see, hear, smell, taste or feel something that isn't there. Some hallucinations may be frightening, while others may involve ordinary visions of people, situations or objects from the past.” source Alzheimers Association
I had thought at one time that Mom was hallucinating, but for sure this is more tactile than just making up stories.
According to the Alzheimers Association, delusions are “firmly held beliefs in things that are not real”.
We see these in the times when our loved ones accuse us of having stolen from them or when they think a neighbor is spying on them. It is important to remember that while they are not real, they do seem real to our loved ones.
What Kinds of Stories Do They Make Up?
Having seen the definitions of the three types of “stories” I can say that my Mom is firmly in the delusional or confabulation categories. Hers are not so much seeing things that aren't there but more distorted memories and believing really strongly things that aren't real!
In case you are wondering, I am not telling these stories to shame my Mom in any way, instead I am trying to help caregivers who are just getting on the scene and seeing and hearing things that they just don't understand.
I know the first time we had a call from Mom in the nursing home, we freaked out and thought, “this is the end, she has gone over the edge!” But it was just a little episode and she is “dementia fine” again.
One of the delusions that Mom has from time to time is that a Realtor is going to come over and talk about selling her condo. Weird since my best friend is the Realtor who would really sell her condo and my daughter is currently living there and paying rent.
It is really tempting to try and figure out why this is coming up… is she sad she doesn't live there anymore, did she get a phone call or read a flyer from a Realtor… what is going on?
But honestly, trying to figure this out is not something that will ever work. Mom just has a couple of wires crossed and it comes up every couple of weeks or so out of the blue.
Okay, this one is funny now, but wasn't funny at the time. Mom was in the nursing home for a couple of weeks and was planning out her room at our house. She was confabulating at the time since I think she was remembering her room in our old house, but it wasn't exactly the same.
She was shopping for grills … like gas grills you have on the back porch to put in her room! Her carpeted room, in our house!
I was super stressed and didn't handle it as well as I could have, trying to reason with her about why she couldn't have a GRILL IN THE HOUSE!
Knowing what I know now, I would have understood she was freaking out about being in the nursing home and I should have played along and shopped for grills with her (there was no internet connection to actually order a grill, and even if she had, we could have returned it!)
It would have been much kinder to just let her be and of course, she had forgotten about it the next morning anyways.
This one is super sad and we were devastated by it! Mom called one night from a weird cell phone number. She said she was in Key West (she lived there about 20 years ago) and that she had fallen and was locked into a nursing home. She sincerely thought that we didn't know where she was and she was frantic.
Well, she was 15 minutes away and I had left about 2 hours before from a visit, but she was totally disoriented and didn't understand why she was there.
She even convinced a nurse to let her use her cell phone because it was “long distance”.
My husband (her son) went back over to see her and she was a little bit better, but damn this one was hard! She really did believe that she was being held captive and was super scared. Heartbreaking all around.
This one was our worst and happened when Mom had a UTI (Urinary Tract Infection). I so wish someone would have told us to watch out for those as they effect memory in very weird ways!
Luckily for us, most times Mom realizes that she is in our home, safe and sound, but I have read about people believing that their caregiver stole their wallet or that the police were staking out their house.
This must be so hard to live with on both sides. For a patient to think that her loved ones are intentionally stealing or that they are not in a safe place is sad.
But it is also hard on the caregivers who oftentimes are just trying to do the best they can. I have my Mom's wallet in my purse right now because I pick up her prescriptions and take her to her doctor. Definitely nothing nefarious, but I can see how it can sometimes seem “bad” if your loved one doesn't remember the context.
Okay, this one devastates me. Some of the people in the groups I follow have told of accusations like being accused of…
- Sexual molestation
- Being abused by their caregiver
- Caregiver trying to kill them
Whoa, I don't have personal knowledge of these kinds of major problems.
What I can say is that any caregiver in this situation should reach out for help. They should contact their loved one's doctor. They should go to counseling themselves and get support any way they can.
It is horrible to hear the stories of caregivers being accused, not being believed and being shamed by other family members. For real, if you are in this situation reach out for help in the real world, don't just talk about it on your Facebook groups!
Where Do They Get The Lie Ideas?
Let's just start with this… like I said before as rational human beings we want to be able to hook point A to point B and figure out where the stories are coming from. But unfortunately dementia and Alzheimers don't work that way.
Our loved ones have a disease that has drastically changed how their brains work and there is no rational anymore. Guessing and diagnosing problems is probably not the most effective use of time.
But let's do it anyways!
Confabulation is all about misremembering the past as being different than it was. Because the past is sometimes clearer than the short term, many times our loved ones will bring something from today into the past and mix them all up.
Unfortunately many telemarketers prey specifically on old people and once they have their number the calls never stop. A weird idea might have come from a phone call or message left by someone who has no connection at all to your loved one beyond exploiting them!
Now this one I can connect…when mom watches the food network she totally wants to cook on a hotplate in her room! She will start cruising microwaves and hotplates on the internet and make plans for all the meals she will make!
Our house watches pretty benign TV shows but for sure if your loved one is watching police dramas or shows about sex, rape or murder you might want to direct them over to more light fare!
Whether they are reading newspapers online or on paper-paper newspapers generally have horrific stories in them. Maybe think about switching them over to a magazine about a topic they like or limit the number of days they read the paper.
You can simply say that the must have gotten stolen or that the subscription accidentally got cancelled.
My mom LOVES surfing the internet and playing games on her iPad. We try to get her to let her son order things for her since she often orders two of each (forgetting that she already ordered it). But we would never try and take that away from her.
That said, it is super easy to use “parental controls” on any computer or phone to turn the internet off and on at specific times.
Sometimes their current fears come from past traumatic events. It is impossible to know everything that has happened over the course of your loved one's lifetime and there may be things that they don't even remember causing current problems.
These can be fears, hardships, heartbreak or any other kinds of past events that are coming up in weird ways to our loved ones.
Caring For The Caregiver
Lastly we need to talk about you! Caring for an Alzheimer or dementia loved one is grueling and often thankless work. It is important to monitor how you are doing in and among what can be a sea of lies!
Keep Yourself Safe
Okay, this is more for the hurtful people. If your loved one is out and out lying about stealing, abuse or murder, you need to really make sure to document care, maybe use a nanny spy cam to record interactions and contact authorities in advance so they have a baseline in reality.
You Might Be Being Gaslighted
Through their lives narcissists use “gaslighting” to try and manipulate those around them. When you add dementia to the mix problems become even worse. While most of our loved ones were not liars before getting dementia, some were! Here is a great article about The Aging Narcissist: Adding Dementia to the Mix.
Center Yourself Back In Reality!
Back to the rest of us who just have “regular” elderly loved ones who are just confused and telling stories. You need to occasionally get some outside perspective to center yourself back in reality.
Make sure you talk to other family members (if they are supportive), friends, counselors or online support groups.
This is totally the “put your air mask on yourself first” situation. I KNOW it is exhausting and confusing to deal with the stories that our loved ones tell so make sure you are taking care of you so you can take care of them!