Good Morning Everyone – or maybe afternoon, depending on when you are reading this ;). Jumping right into my topic today, I wanted to let you know that last week’s caregiving journey was rough. There were a lot of emotions and a lot of unexpected dementia behaviors. As my mom’s Alzheimer’s dementia continues to move from one stage to the next, I have noticed that behaviors have changed as well. These behaviors have been a challenge to face, not only as a caregiver but as her daughter.
My Mom’s Unexpected Dementia Behaviors
Before I dive into my mom’s Alzheimer’s symptoms and behaviors, I want to clarify that I do not intend to pull items from the already known list that you as a reader could Google. These are behaviors that my mom has displayed and demonstrated over the last few months. I have personally had to respond to these new dementia behaviors and provide caregiving support. With all my research and activity director experience, I was not expecting Alzheimer’s to act way.
Behavior #1: Accusations
I was not prepared for the number of accusations my mom would make. These accusations have a variety of ranges. She has accused her doctor of prescribing her medications that make Alzheimer’s worse or that the medicine has given her Alzheimer’s. She has accused my dad of not loving her. She has accused me of lying to her. She has accused others of hiding her things and moving her stuff on purpose. She has accused my dad of hiding her belongings on purpose because he thinks it is funny. The list goes on.
As caregivers for dementia loved ones, you may have seen communication tools like this one. Rule number 1: Agree, never argue. Rule number 2: Redirect, never reason.
Well, let me tell you, as the caregiver, it is tough not to defend or reason with my mother when she is accusing my dad of something he would never do. I feel like I am in a baseball hotbox stranded between supporting my mom or my dad. This is my life as an Alzheimer’s daughter.
Maybe it is my own caregiving downfall for choosing not to agree when my mom accuses my dad of misplacing things or reasoning with her as to why she can no longer drive. I realize I may be making it more difficult, but I fear that I will reinforce her negative thoughts if I agree. I was not prepared for the emotional toll this behavior has on me.
Behavior #2: Distrust
Before Alzheimer’s, my mom and I had an amazing relationship. We still have a great relationship, but before, we didn’t have any barriers. I trusted my mom, and she trusted me. Alzheimer’s changed that.
Over the past few months, my mom has expressed distrust towards my dad and me. While this may also fall in the accusation category, there are some slight differences. My mom chooses not to share things with me anymore. During phone calls, she will set herself up to ask me something then say, “nevermind, you are just going to tell him anyway,” or “you won’t do it because you always side with him.”
These comments break my heart as a daughter. The idea that she does not believe my dad and I are on her side defending her, helping her, and advocating for her hurts. This distrust creates an Alzheimer’s barrier. I feel that I need to walk on eggshells when talking to my mom. I never expected our relationship to take this turn.
Behavior #3: Pendulum Emotions
The tears! OMG, So Many Tears. I think common sense is that health’s impact on our brain will impact our emotions. Wow, I was not expecting this type of emotional impact. In a 15 – 30 minute period, my mom will go from stewing anger to fearful crying, then depressed crying, moving on to forgetful confusion, then being happily distracted. An hour later, this pattern may have a chance of repeating. Responding to this as a caregiver is exhausting!
This emotional pendulum and unexpected dementia behavior is a lot to handle. To make this more challenging, I am often responding to this behavior over the phone. My ability to physically comfort her is not there, and I have to work extra hard to hold her attention while redirecting and distracting her from changing emotions. If I don’t get this just right, she may lose her phone while talking to me. She has done it before, as I describe in this post.
Behavior #4: Distorted Thinking
So this one has been one of the most difficult unexpected dementia behaviors to wrap my head around. I knew there would be delusions, but I was not prepared for what the distorted thinking would look like, nor was I prepared for how to respond.
My mom’s most recent distorted thinking is that my dad and I are having an affair. And she is set on this; there is no redirecting out of it. To be clear, I’m not sure if she believes this is incest or an emotional affair, but the thought of her thinking this way is terrifying. I knew the loss of logical thinking would come. The day she accused my dad and me of this was a hard hit. We were shocked and had to figure out how to respond. My dad and I did our best, but there is no reasoning with Alzheimer’s. So now, during this journey, I face this challenge. And oh, what a challenge it is.
Behavior #5: Unfiltered Speech
We all might have that one person we know that says whatever crosses their mind without a filter. Well, I never expected this person to be my mother, or at least not until she was much older. My mom’s confidence in saying what is on her mind at any given moment brings a tightness to her chest. Combine all of her other unexpected behaviors with unfiltered talking, and it can lead to big disasters.
One of the more challenging pieces of this behavior is a shame. I fear that she will say or do something in public that is not acceptable. I know that I stifle some of her actions and statements, fearing how others will interpret them.
As her daughter and caregiver, I am still learning to accept this unexpected dementia behavior. I am still learning not to feel shame when she says something inappropriate. Learning to accept is a challenge.
Caregiving For My Mom’s Unexpected Dementia Symptoms
As caregivers, we have all learned to adapt to unexpected behaviors and symptoms from our loved ones. That said, I don’t think we realize the emotional toll this can take not only as a caregiver but also in our original roles as a loved one; daughter, son, spouse, sister, brother, aunt, uncle. The sting I feel when my mom’s behaviors are directed at me hurts as a daughter. I think I have control and can brush it off until, out of nowhere, the painful feeling builds up and my emotions take over.
Unfortunately, there is not a caregiving handbook. If there was I’m sure it would be a best seller. As my mom’s caregiver, I have to figure out how to navigate these unexpected dementia behaviors as I’m sure you have had to figure out how to manage your loved ones behaviors. This isn’t easy. And as we all know this is an ever changing process.
Here are a few resolutions I have come up with:
- Using the Alzheimer’s communication tool. I know that using this tool is hard, and for some behaviors, this tool doesn’t work. But in most situations, it can. I share how I use distractions and redirection in this post.
- Taking a moment in difficult and highly emotional situations to practice fast gratitude. Fast gratitude helps me reset and face difficult challenges. I share more information on how to practice fast gratitude in this post.
- Asking for affection. At the end of the day, my mom is still my mom. She has the paternal instinct to love and protect me. Asking my mom for a hug or hugging my mom can create a shift allowing for the change in the difficult behaviors.
- Finding support and being able to talk about it. If you are a caregiver and you don’t have a support group yet, well, here you go. I promise this will have a HUGE positive impact on your caregiving journey.
How Do You Care for Loved Ones With Unexpected Dementia Behaviors?
Every caregiver’s journey is different. We all face different challenges. Some of you may have already experienced and mastered caregiving responses to the behaviors I have mentioned if you have any tips, please share. Seriously, I love tips!
On the other hand, some of you may not have to experiences these unexpected dementia behaviors. I may never experience the unexpected dementia behaviors that you have faced. With every dementia caregiver’s journey being so different, the most important thing we can do is support each other. By sharing our stories, we can also share our solutions.
Start now! Share your caregiving stories with me. What unexpected dementia or caregiving behaviors have you faced? Any tips for overcoming these challenges?