“I can’t believe what my husband did.”
“I am sure that Dad is doing that to get attention. He knows better!”
“You are not going to be believe what Mom is doing now to aggravate me.”
Statements like these are made over and over by family members and caregivers who live with someone who has dementia. They simply cannot believe what their loved ones are doing and saying.
These behaviors include repeating themselves constantly, shadowing their caregiver, or flipping the TV channels nonstop. Dementia patients are known to engage in many unusual and often “annoying” behaviors.
Family members and caregivers question if these behaviors are intentional, often try to correct or stop these mannerisms, and find that their attempts usually fall flat.
Dealing With Dementia’s “Annoying” Behaviors
Here’s the truth: As frustrating as it may be, you cannot stop the “annoying” behaviors that accompany dementia or Alzheimer’s disease. You can try all you want, but it will not work.
As human beings, we are wired to tell someone who is doing something annoying to knock it off. Unfortunately, this just is not how it works with dementia. If it were that easy, we would not have the plethora of issues that arise with caring for a dementia patient. It just isn’t that easy. Period.
For example, you may have tried everything to keep your loved one from constantly following you from room to room. It’s not easy having someone linger by your side every waking second. This is called “shadowing” and many dementia caregivers have struggled with this overwhelming behavior.
Shadowing in Alzheimer’s Disease
It is thought that the dementia patient does this because they have a fear of being alone. How do I know this? Because I have done this on many occasions. An out-of-proportion fear overwhelms me when my wife Phyllis June is out of sight.
You may read suggestions on how to stop shadowing, but that’s all they are: suggestions. What you are essentially doing is trying to get a person with a progressive brain disease to realize that what they are doing is unnecessary and has to stop.
In short, good luck with that. Whatever behavior your loved one may be exhibiting, you can be sure that they are doing this unknowingly. In other words, it is likely completely involuntary. They do not wake up in the morning with a plan to follow you around all day. That simply does not happen. In order to do this, they would have to have the ability to plot and execute such a plan. Most dementia patients who display problematic behaviors no longer have these capabilities.
The very best advice I can offer caregivers who are struggling with dementia behaviors is to find a way to personally cope with the frustration. Changing your own perspective is within your control, trying to change these behaviors is nigh impossible. Please understand that I’m struggling—it’s not just my behaviors. As a dementia patient, my whole world is beginning to feel completely out of my control.
By all means try any suggestion you may believe will work. Even a temporary fix may bring some comfort to both of you. My guess, though, is this improvement would only be temporary at best. Trust in the knowledge that all dementia behaviors come and go. As the disease progresses, behaviors change. Given time, this too will pass.
Repetitive Questions and Dementia
I ask Phyllis June about five times each morning, “What day is it?” She tells me, but then five or ten minutes later I’ll ask again. I don’t repeat the question because I forgot what day it is. I ask again because I forgot I even asked her in the first place.
Instead of her reminding me that I just asked this question or somehow trying to help me remember what day it is, she simply tells me the date. She knows full well that I am going to ask again in just a few minutes.
You see, she has learned over a period of time that it does absolutely no good to try to figure out how to get me to remember things like this. None. I no longer have the ability to remember the date because I have no short-term memory. It’s as simple as that.
It may be less frustrating for each of you to use this approach. Instead of wasting your time and energy on trying to figure out how to help a dementia patient remember something, just give an abbreviated answer to their question each time they repeat it.
What Can I Do to Help Them Remember?
With the best of intentions, caregivers often try to manage signs of cognitive decline. We think, “What can I do to help them remember?” In the grand scheme of things, family members or caregivers tend to lose sight of the truth. The truth of the matter is, as cognitive changes progress, you can’t help dementia patients remember.
Accepting the truth is difficult, yes, but this approach is much less frustrating in the long run. It will keep your stress levels down as well, since you won’t be trying to win a losing fight. All caregivers must take a moment from time to time to realize that they cannot fix or change what is happening.
Unfortunately, as bad as some of your loved one’s new habits are, they are probably an indication of the progression of things to come.
The bottom line here is try not to be angered by what your loved one is doing. You can try your hardest to help them with troubling behaviors, but the lack of response to your efforts will most likely leave you even more frustrated.
We all want to fix whatever it is our aging loved one is going through. While this is a compassionate and noble thing to want to do, the problem is that, with dementia, it is never that simple. Do not beat yourself up for being unable to fix the unfixable. Recognize your capabilities and don’t hesitate to ask for help. As frustrations mount, find an adult day care center, hire in-home help and take a realistic look at your ability to provide continued care. Dementia care is hard for everyone involved.
Editor’s Note: Phyllis June Phelps, Rick’s wife of 38 years and primary caregiver, passed away November 9, 2021. She was 64 years old.