The ‘Easiest’ And Toughest Dementia Symptoms Vary

As we continue to discuss this horrible disease, our stories continue to weave together and apart. There are symptoms and manifestations of dementia that I deal with in The Job, and there are different ones that you might be struggling with. That said, the easiest and toughest dementia symptoms are all difficult to handle in their own way.

Every journey through this cesspool is different, and the biggest problem is we don’t know what will be next. With Pop, cancer was cancer, and it followed quite predictable patterns. With Mom, every day can be a new adventure. I’ll say it again: I’d take the physical deterioration over this mental decline any day of the week. 

The “Easier” Dementia Symptoms

I freely admit that, for the most part, Mom continues to be a passive sufferer of dementia. While we have moments of anger and delusions, her days are relatively peaceful, as are most of our interactions. She continues to forget more and more simple things, and the activities of daily living are now out of her individual abilities, but she is relatively pliant. She will usually allow assistance, and doesn’t become angry when she realizes what she has forgotten. If anything, she becomes tearful about her brief outbursts of anger, crying and asking for forgiveness when she returns to herself.

Frankly, I’d prefer the anger, because seeing her cry breaks my heart. 

Hopefully, your journey through The Job has been relatively calm and mild. The problem is, that can change on a dime, as new and more problematic symptoms slap you in the face when you least expect it.

The Toughest Dementia Symptoms…

There is no limit to the ways dementia can rob your loved one of their previous personality. It is a thief in the night, and you can easily wake up the next morning with a whole different person living in your house. Here are some of the toughest dementia symptoms:

Aggressiveness

I’ve had a bit of this, maybe once or twice every six months. Mom even lashed out at her beloved nurse once in her anger. Aggressive behavior at my house includes slamming doors, trying to barricade herself in her room, yelling at me for perceived wrongs, and trying to hit me with her walker. I’m sure your stories of bouts of aggression are quite similar, and quite different. This symptom is difficult in the moment, but, fortunately, tends to be rather short in duration. For Mom, once the initial anger is out of her system, she calms down and becomes quite repentant.

Hallucinations

Up to 1 in 3 dementia sufferers might experience hallucinations and/or delusions (source) making it a likely, and extremely difficult, symptom you will have. I have had this happen from time to time, but never to the unfortunate degree my mother-in-law suffered.

Sweet MIL saw people in the room, saw people trying to get in the house, heard noises of people breaking in, and several other difficult hallucinations. My sisters-in-law who cared for her were at the mercy of these hallucinations, and the worst part was that it stole sleep from not only Sweet MIL, but the entire household. She would become extremely agitated about the things she was seeing, as she believed them with her whole heart. In my case, they were one-offs—Mom would ask me who was at the door, or who the woman was sitting on the couch, but wouldn’t get upset about it, and it didn’t last long. 

Delusions

We absolutely dealt with the delusion that somebody was sneaking into Mom’s room and stealing things during the early dementia phase. It was actually my first clue that Mom wasn’t just becoming forgetful. Believing things that aren’t true—the definition of delusions—is a very difficult symptom to deal with, because Mom believed these things with her whole heart. She had started to hide things because of the delusions, and then would blame the “invisible thief” when things were moved.

There is absolutely no argument with this one. My favorite one was her delusion that we were on a cruise ship. We would walk Mom to the back door and go on the patio to prove it wasn’t the ocean! 

Unrelenting Anger

This is a toughie.

Fortunately for me, Mom’s periods of anger and aggression were very quick and infrequent. Unfortunately, I know several people who have to deal with these bouts of anger most of the day, and sometimes it becomes physical. Many times, the anger stems from one or more of the symptoms listed above. For example, most of Mom’s anger stemmed from me disbelieving her delusions and hallucinations. She would get quite upset, yelling at me that I just didn’t see the man in the doorway, or that it was probably me who stole the watch. 

What Else Can Happen?

This is my “viewer participation” part of today’s blog. What symptoms are you seeing? Because, I’ll tell you, it could be anything. While most symptoms can fall into one of the categories I’ve listed above, I just never know what I’m going to walk into, and I know that’s true for you as well. 

One of my favorite’s comes from a good friend, who cared for her mom in her home until it was untenable for her. Her mom was convinced Cheryl’s husband was her boyfriend. Convinced. To the point that she expected physical interactions with him! She would talk to Cheryl about him in quite inappropriate ways, and behaved quite coquettish whenever he was around! Now she and I laugh about it, but at the time it was a difficult one to manage. Definitely one of the toughest dementia symptoms I have ever seen.

How Long Can They Last?

This is a huge part of the problem, because they can vary from a quick comment to an unrelenting hallucination that extends day after day. Plus the ever-changing nature of dementia symptoms means that it might be a quick argument today, but turn into an all-day shouting match tomorrow. It is, unfortunately, unpredictable.

For me, difficult and damaging behaviors were limited to very short periods of time, and never went into the next day. I’m lucky. My Sweet MIL, however, couldn’t get out of her delusions and hallucinations near the end. They bothered her endlessly, which obviously upset the entire household. One of the worst recurring hallucinations was that she was on the edge of a cliff, so she was terrified to move a muscle. She would grip Sweet Husband with all her strength, begging him not to move so they didn’t go over the cliff. It was heartbreaking, and she had little relief. And nobody slept. 

How Do I React In The Moment?

It is really, really difficult not to take some of this seriously. Especially if you are exhausted and stressed out. It hurt my soul (and hit my mom’s protective instincts) when Mom accused my Sweet Son of stealing from her. It’s hard not to lash out in anger and retaliation. I was fine when she was raging at me and accusing me of disloyalty and theft, but when she blamed others in our house, it really struck a nerve. My sisters-in-law were absolutely exhausted and wrung out from dealing with 24-hours a day of accusations and irrational fears. Even Cheryl’s husband became quite testy when her mom kept approaching him.

I get it, I do. But…you can’t react. You can’t take it personally. It isn’t about you—it’s about this disease we hate. Don’t be reactionary to the point you will be regretful and guilty later. You can’t logic or rationalize these symptoms away, so don’t even try. I remember jumping up and down on the patio trying to prove it wasn’t an ocean—but it did no good.

You just have to power through until the symptoms quiets down.

You have to keep them physically safe, and as calm and stable as possible.

What Can I Do Long Term?

You can’t do a damn thing for them.

You can, however, control yourself. And you must. 

It’s important that when you have some downtime and reflection time, you think about what symptoms you are now facing, and build up your reserves of patience and tolerance so you can deal with the symptom without mishandling the person. I am a firm believer in self-talk, and spent many late nights talking myself through the scenario that had happened—or the scenarios I anticipated in the future—and walked myself through how I would handle it. For example, I would come up with simple, positive, upbeat lines I would use to diffuse the situation. I memorized a number of responses that I would then use with Mom while she was raging.

I also gave myself permission to walk away when I had to. As long as she was physically safe, it was important for me to sometimes step away for a few minutes and gather my strength. It helps when you are tag-teaming The Job, like I am with Sweet Husband, but even if you are alone at the time, you absolutely can walk away to regroup. 

A Final Word

The Job sucks. It’s the most noble in the world, in my opinion, but it sucks. Every day with dementia is painful and scary and steals from you the person you love. Sometimes you just need to power through like you would anything difficult and unpleasant.

My best piece of advice is this: Remember who they were.

That little piece of advice will help you in the toughest times, as you battle someone you totally don’t recognize. Visit my Facebook page (https://www.facebook.com/pilatbuono) and you’ll see a fabulous picture of Mom and Pop from about a decade ago. It has been my cover photo since it was a new picture, and will stay there. Those are my parents. Not the shells of people that illnesses created.

Remember who they were. It’ll help you deal.

THANK YOU FOR READING THIS FAR

Wow! You made it! Thank you for reading about the toughest dementia symptoms!

Hey, since you’re here! You may as well check how to handle moderate dementia, here, or see what the severe stages of dementia might look like here! Or, check out our other topics here! Either way, I appreciate you!

Please leave a COMMENT about any tips you may have!! Or comment with YOUR story! What are your next steps in eldercare? Any dementia stories? Let me know!

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