Some Days Are Harder Than Others

Yesterday was a great day for Mom. We had cinnamon rolls for a snack, and watched The Caine Mutiny followed by some western she was thrilled was on. Last week was a train wreck. She refused to get out of bed until lunch, wouldn’t get dressed, slept all day in her recliner and didn’t even want to watch The Wizard of Oz when it came on. The dementia causes me a lot of confusion too.

Welcome to severe dementia. I know you can relate. 

Dementia Confusion Is Different Every Day

When Pop was in decline, it was totally physical. So, while some days he had more pain than others, he was always quite predictable in his mood and demeanor. If he woke up in pain and slightly impatient, he was like that all day long: predictable. If he woke up in minimal pain and a great mood to chat about the stock market and vacations, he stayed in that mood until bedtime: predictable. 

Mom can change minute by minute. Deep confusion with dementia is almost random. Unfortunately, the tough days tend to linger throughout the day, but the good times come and go quickly. Great days? Less and less frequent, and with shorter durations. Things are definitely going downhill around here. 

Dementia has a mind of its own—specifically Mom’s mind—and doesn’t always respond to my efforts to normalize things. So we devotees of The Job are left with limited resources for helping our loved one’s through these tough times. What things can I recommend you keep in your toolkit for the tough days?

Here’s a little list:

Minimizing Confusion

Mom spends a lot more time not understanding what is happening around her, and it is very difficult to watch. There are a few things I try to keep relatively constant, in the hope that it helps her stay “in the present” and feel powerful and in control of her surroundings.

More routine

The only surprises Mom gets from me are when people come to visit. I didn’t tell her when Bob and Bill were coming to visit, for example, so they both surprised her by entering the room. Other than that, I keep things as predictable as possible, so she doesn’t get flustered by things. 

Regular menu

The cinnamon rolls mentioned above are a favorite snack, as are fresh bananas and pineapple. I try to have at least one of those things on me every time I enter her room. Not only because it has become predictable for her to have one of these treats, but because she isn’t eating much at meals. She generally sleeps through breakfast, and eats minimally at lunch and dinner, so I’m happy to supplement with some of her favorite treats.

These basic needs being regulated really minimizes the confusion from the dementia.

More comfort items

While I try to keep her room and decorations fairly stable, it is important for her to have some new things to enjoy and look at. As I’ve mentioned before, I put a new picture up every month or so, as well as some statues of turtles or elephants she loves. I also trade out her lap blankets from time to time, because she likes getting new colors and designs. 

Less people

I would never discourage anyone from coming to see Mom. But, she can’t handle a crowd of people barging in on her anymore. It isn’t fun for her, and she becomes overwhelmed and upset. So, while I know you want other people to visit with your loved one, make sure it is not a crowd, and it is not too frequent. Mom definitely needs a week or so between visitors or she gets anxious about being social.  

Less stimulation

All of these suggestions culminate in creating an environment of predictability—with just a hint or excitement and surprise. Even when my brothers came to visit, they simply entered the room as if it was a normal daily occurrence. No balloons and streamers. No yelling and throwing open the doors. Make it a sweet and gentle surprise to minimize the anxiety and stress of a visit or a change of decor. 

Handling Those Particularly Confusing Days

Last week was a train wreck from start to finish. Mom had very limited moments of clarity, and spent the majority of the time in a world where she was quite young and her mother was still alive. Nanny died in 1998, so we were definitely in the way back of her memory. How do you handle those days so that Mom isn’t disturbed or shocked into reality? Here are a few suggestions: 

Come in calmly and slowly

This is definitely my modus operandi every single time I enter her presence—I come in calmly and slowly, with a big smile on my face. I don’t yell hello or throw my arms in the air. I just come in at a normal pace with a regular hello. I immediately go up to her and kiss her cheek, even when she doesn’t even raise her head. I want my appearance, and my leaving, to have that “normal” and predictable feeling, so that she knows that she can count on me to be the same every time. And that I will always come back. 

Come in very small groups

The other day all four of us were visiting together—me, Sweet Husband, LeeLee and RobberBaron. I went in first and did my normal greeting that she would expect from me. Her first question was where is Sweet Husband and why isn’t he visiting today. That was the perfect opportunity for him to walk in and greet her like he just arrived moments after me. A few minutes later, I calmly told her the kids were here, too, and they walked in together saying “Hi, Granma” in normal voices.

By entering in that way, it wasn’t shocking or overwhelming for her, so we could all visit at the same time without putting any social pressure on her. 

Minimize the gifts

Processing change is a huge problem for Mom now that the dementia has become severe, so we need to keep things as small and simple as possible, so she can actually enjoy things without becoming exhausted or overwhelmed.

That is hard on gift-giving holidays, but we managed to stretch things out for quite a while, revealing one present at a time and taking a break after each one. She was able to unwrap and enjoy each thing individually, without seeing the pile that she had yet to open. If possible, spread the gifts out over several days. I do that with letters and pictures, so that she always has something to look forward to, but not in an overwhelming volume. 

Keep it short

With the exception of my family, visits are very taxing on Mom now. She feels pressure to socialize, but can’t really grasp how to do that anymore, which makes her frustrated and sometimes angry.

This happened recently when my brothers each visited, so they just kept their visits short, so she could go back to her peaceful relaxation in between their visits. Make sure you share this with anyone who is going to visit your loved one. It’s not that she doesn’t want to see them, it’s just impossible for her to maintain a social environment for more than an hour or so before she becomes overwhelmed. 

Don’t Be “Married” To That Day

This is important for you to remember, so that you can stay on your loved one’s schedule and not Hallmarks. Birthdays are whenever the hell you say they are. So is Christmas and Valentine’s Day. The DATE that you celebrate something isn’t nearly as important as your loved one being an engaged participant in the festivities.

On her birthday, for example, I left the presents outside her room while I entered, just in case it was a bad day. If she was struggling that day, we simply would have celebrated the next day—she doesn’t care what the calendar says! Confusion with dementia doesn’t care!

Don’t Take It Personally

I’ve given you this important piece of advice plenty of times in the past year. 

It’s not about you. It’s not in spite of you. It’s not because of you. It’s not you, Boo Boo. At all. Don’t take it personally.

It is your responsibility, however, to make sure people entering your loved one’s space understand this, as well. They have to understand all of the confusion that comes with dementia. If they don’t understand it, and they take it personally, the visits will stop and that will just leave your loved one alone more of the time. 

Rely On Your Memories Of Better Days

I don’t make my relationship with Mom right now a core memory. I don’t try to create joy and connection on the days it doesn’t exist. I don’t pressure her to be the mother I grew up with.

I rely on the 50+ years of memories I already have. When things were stable. When things were predictable. When things were good.

Lean on your shared past if your present isn’t satisfying. 

That’s what Mom is doing, too.

THANK YOU FOR READING THIS FAR!!!

Wow! You made it! Thank you for reading about confusion with dementia!

Hey, since you’re here! You may as well check out part 1 of my Mother-In-Law story, here, or if you’ve read that, check out part 2, 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! Any dementia stories? Let me know!

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