"I can't believe what my husband did.”
"I am sure that Dad is doing that to get attention. He knows better, and I will tell him so.”
"You are not going to be believe what Mom is doing now to aggravate me."
This is heard over and over by family members, caregivers and even patients. They simply cannot believe their loved one is doing what they are doing, and saying what they are saying.
These behaviors include repeating themselves constantly, shadowing their caregiver, or flipping the TV channels non-stop. Dementia patients are known to engage in many unusual and often annoying behaviors.
Family members and caregivers often try to correct or stop these mannerisms, but this attempt usually falls flat.
Here is something you will not hear anywhere else, yet it is absolutely true: You cannot stop these annoying traits that patients pick up. 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. This just is not how it works with dementia. If it was that easy, we would not have the plethora of issues that arise with caring for a dementia patient. It isn't that easy. Period.
For example, you may have the best of intentions when trying to keep your loved one from constantly following you from room to room and being by your side every waking second. This is called "shadowing" and many dementia caregivers have struggled with this overwhelming behavior.
The patient does this because they have a fear of being alone. How do I know this? Because I have done this on many occasions. Once this starts, the only person that can change it is the patient.
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 unnatural and has to stop.
In short, good luck with that. Whatever your loved one may be doing, you can be sure that they are doing this unknowingly. In other words, it is like 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 more problematic behaviors no longer have these capabilities.
The very best advice I can offer caregivers who are struggling with dementia behaviors is to deal with it. This sounds simple, but it never is. However, trying to change these things is nigh impossible.
Say for the sake of argument something you did actually stopped them from shadowing. My guess is this improvement would only be temporary at best. The only thing that can stop these quirks lies within the patient themselves.
For example, your loved one is not going to follow you around until the day they die. Given time, this will stop, even if for no other reason than they are no longer capable of walking.
Or there will come a time that they no longer repeat anything. This may be due to a loved one’s deteriorating communications skills. Many dementia patients eventually become mute.
For example, I ask Phyllis June about five times each morning, "What day is it"? She tells me, and 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 her 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.
Do this with your loved one. Instead of wasting your time and energy on trying to figure out how to help them remember something, just give them an abbreviated answer to their question.
You see, we try to micro manage what is going on here. We think, “What can I do to help them remember?” In the grand scheme of things, family members or caregivers tend to lose site of the truth. The truth of the matter is you can't help dementia patients remember.
Accepting the truth is difficult, yes, but this approach is much simpler 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.
Another thing to keep in mind is, as bad as some of your loved one’s new habits are, there can be, and probably will be worse ones coming.
If they stop shadowing you, for instance, they may end up exhibiting another behavior that is far worse in your mind.
The bottom line here is try not to be surprised by what your loved one is doing. You can try your hardest to help them with it, but it will most likely be useless and leave you even more frustrated.
We all want to fix whatever it is our 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.