Does this feel familiar: “I quit my job to care for him, but he never appreciates anything I do.”
Do you find yourself thinking, “Why is she so mean to me? Can’t she see I’m trying to help her?”
Are you asking yourself, “How do I handle the stubbornness? It feels like I’m fighting all of the time.”
You are not alone. One of my colleagues calls these behaviors “Dementia S&M”—stubborn and mean. In today’s blog, I’m going to untangle these behaviors and provide some approaches that you may find helpful. But first, it helps to know if your family member’s behaviors are new…or if they have always been difficult.
- What was their personality like pre-dementia? In other words, is the current behavior completely new and out of character for your family member? Or was your family member always difficult, except now the volume of the behavior is cranked up?
Sadly, there are people who have spent their entire lives acting miserably and meanly. If someone behaves like a jerk throughout their life, they become a jerk with dementia. It’s sad…but if you found your family member’s behavior disrespectful, unloving, and downright nasty for as long as you can remember, the dementia is not going to create a personality change. I know there are a few people out there who swear that their loved one became wonderful and sweet after the dementia diagnosis…but I have not encountered that change much in my 40 plus years of dementia care.
If this is your situation—if you feel obligated to care for a family member who has nobody else…who has always been difficult or disrespectful to you…maybe who has been downright nasty…I’m going to make a suggestion. You may not be equipped to care for them because of their long-standing problems that, for whatever reason, they never did the work or addressed their problems. I know this is going to sound horrible…but this may be a situation where you must walk away. Or, if you choose to stay, protect your own mental health and sanity. Find a therapist who can help you provide the necessary care without jeopardizing your own mental health.
Let’s switch gears: What if the stubborn and mean behaviors are new? Here is what is going on. Many people living with dementia are completely unaware that their memory is not working so well. They try to use the remote or struggle with an appliance, and believe the remote is broken or the TV is messed up. You know that is not the case, but they feel like everything is normal. In their world, they are using the remote like they did every day but today, the damn thing isn’t working. Meanwhile, you are watching them point their smart phone to the TV and push buttons…and the remote is sitting right there, on the table next to their chair. When you try to point out that they are using their smart phone and not the remote, you get an angry response and maybe an insult thrown in.
Irritability comes into play, too. All of us have brain chemicals that work to create balance—to help us to handle frustrating situations without blowing up. In fact, we can increase certain helpful brain chemicals—like dopamine and serotonin–by exercising and meditating. You may notice that when you exercise regularly, or start meditating, you feel less annoyed by life events. You have more tolerance for the stupid shit that would have bothered you before.
But your loved one with dementia? They are slowly losing brain cells–neurons—and the loss of brain cells creates more chemical instability in their brains. They are less able to tolerate life’s stupid shit and more likely to flare up and over-react to things that you think are no big deal.
Without realizing it, you may be pouring gasoline on the dumpster fire by acting in ways that you think are loving or helpful…but have the opposite effect in Dementia Land. You may try to show your family member what they are doing wrong…and their behavior escalates. You may try to explain something…and you accidentally push the irritability button. You may argue with them because…damn it, you are right and they are behaving irrationally and once they see how irrational they are, they will appreciate you and everything you do.
Nope. In fact, many people living with dementia have something called “anosognosia,” which is an inability to appreciate the extent of their problems. They feel like everything is fine and YOU are the crazy one. If someone has anosognosia, they don’t believe they need help…so why should they express appreciation for your help, for your sacrifices? They just don’t get it…and telling them over and over how much you help them, how much you are caring for them, causes a horrible cycle of worsening stubborn and mean behavior.
OK. I’ve explained what is generally going on in the brain of a person living with dementia who is reacting to their environment, and to you, with stubborn and mean behaviors. Here are some general approaches to help you minimize these stubborn and mean behaviors.
Short, Sweet, Concrete
You will get better cooperation and less frustration if you use fewer words in your sentences. Use “please feed the dog now,” instead of “Hey, Dad, do you mind feeding the dog?” During the mild stage of dementia, you can use 2-step commands, like this: “Please go to the pantry and bring me a can of dog food.” Avoid confusing directions, like this one: “Before feeding the dog, take her outside.” Instead, try: “Please take the dog outside, then feed her.” As the dementia gets worse, you will have to go down to 1-step commands, for example: “Please go the cupboard.” Wait until your family member is standing in front of the cupboard.) “Please be me one dog food can.”
This strategy is going to feel really weird when you first start using it. Most of us speak in paragraphs, but people living with dementia can only “hold onto” bullet points. Why? Dementia is a disease that kills off brain cells. As more brain cells die off, there are fewer “containers” to hold onto the words long enough to make sense of them.
Talk to Them Like Adults
One of the immediate problems I see with family members using the “short, sweet, concrete” approach is that you accidentally start speaking to them as if they were children. You don’t mean to do it…it just happens. Many people living with dementia are very sensitive to patronizing tones of voice or a condescending attitude. If you are using the short, sweet concrete approach and you are experiencing more stubborn and mean behaviors, it may because you have fallen into this trap.
Another communication trap is elderspeak, which is talking to an older adult like they are a small child. Think “baby talk.” Elderspeak includes using a high-pitiched, sing-songy voice; using terms like “honey” and “sweetie” that you did not use BEFORE dementia showed up; and saying things like “Are WE ready for OUR bath today?” You may find yourself using elderspeak without even realizing it, especially when it feels like your family member is acting like a child. Slipping into elderspeak will cause all sorts of behavior: arguing, angry outbursts, even physical aggression. Yes, there are times when your family member may act in a child-like manner. Whatever you do, never talk to them like they are children. The person living with dementia may forget a great deal about him or herself, but they will NEVER forget that they are adults.
If you are struggling with stubborn and mean behaviors, I can help you. One of the services I provide is private dementia coaching. Right now, I am offering 90 days of support: 12 1-hour weekly sessions to help you understand, prevent, and manage many difficult dementia behaviors plus real-time using Voxer, a private communication application that allows us to send each other audio messages. I record the sessions and send you the audio links. You download those files and keep them forever, to review as often as you like. The coaching sessions include up to 4 people for each session, meaning that you and your siblings or your adult children can participate together. I find this approach a sanity-saver for the primary caregiver, who often gets pushback from other family members who don’t see what the big deal is, or who is pulling their hair out with added burden of coordinating care with family members who are separated by miles and time zones. I also found that I get to be the hard ass on these calls, which can be very helpful with some family dynamics.
You may also be thinking, my situation isn’t that bad. Compared to the guy it the support group whose mom finger painted the bathroom with feces, no, your situation isn’t THAT bad. But if you are feeling stressed out…if you are having arguments with your kids or your partner because of your caregiving responsibilities…if you can’t focus at work because your mom is calling you 12 times an hour—or you are wondering if the sitter showed up—I can help. This 90-days of support program has your name all over it. At the end of the 90 days, I want you to feel like you can handle anything. You know what is going on, and you have the tools to manage these behaviors. In fact, you are the expert in your own support group—people are going to you for the answers.
Dealing with refusals and arguments? Get a free copy of “Dementia Hacks” today–click here.
Dr. Rita Jablonski
Rita Jablonski, PhD, CRNP, FAAN, FGSA is a nurse practitioner, researcher, tenured professor, and former family caregiver. Her research and practice involve all aspects of dementia management; she is best known for non-drug strategies to address dementia-related behaviors.