Yeah…It’s Definitely Dementia…Not Just 92

Every year, at her annual wellness-check with our primary care physician, they give Mom the “Medicare test”. I don’t know what it’s called, but I know Medicare requires it to be done every year. And Mom dreads it. It frustrates her because she knows she isn’t doing well on certain things, and she looks to me for answers I’m not allowed to give. So the Medicare test was the first inkling we had that this wasn’t just normal age-related memory loss. This. Is. Dementia. Now What?

In the beginning, the answers to common questions (who is President, what city are we in right now) came quickly, but over the years even these questions took more time. She always did well with the section where she had to write a sentence—not missing words or slanting her writing. But the drawing section, which I guess is to test left and right brain activity, is a total fail every time, and man does she get mad. It was this test that sent her to the Neurologist for the definitive diagnosis. That was a bad, bad day. 

I Am Not A Doctor

Not in real life, the blogosphere or on TV! I am NOT a doctor of any shape or kind, nor do I pretend to be. All of my information and knowledge comes from reading the works of other people, and my own experiences with my loved ones. Nothing I say should be taken as any type or form of medical advice. Listen to me, sure, but trust your medical professionals with the continued care and diagnosis of your loved one. 

Now, let me tell you how dementia continues to unfold in Mom’s case… 

You can’t NOT notice

We are in the moderate stage right now. The neurologist called it “advanced moderate” at the last visit, so it might be further along than I thought—that wouldn’t surprise me. You absolutely can’t NOT notice the moderate stage. At this point, as you transition through things, their independence will be severely restricted, and The Job will take more of your time. This is when I officially became Mayor of Crazytown. Before this, my part-time caregiving job with Mom was manageable. Now…not so much…

It will be frequent

This stage of dementia has a number of symptoms that can impact your loved one’s ability to continue to live their best life. Increased forgetfulness will probably not be the symptom you notice—it wasn’t for me. What really hit me over the head were the personality changes. My mom, who used to be the sunniest, happiest soul, singing and humming her way through every day, became someone else entirely. This happens only rarely, but, boy, did that first time hit me like a brick! 

In terms of personal knowledge, Mom can recall her childhood homes, but can’t tell you our address or phone number. She usually knows we live in Las Vegas, but not always, and days of the week—including what month it is—are just too confusing for her now. She is now wearing Depends constantly—and needs them. She is quite restless at night, to the point where we have had to give her sleep aids and an anti-anxiety pill. 

I can go on and on, unfortunately, but I think you get it. Independence is over. 

You can’t explain it away

As we slid into the moderate dementia stage, we went down kicking and screaming. Not wanting to admit things were getting worse, I tried to explain the new and disturbing behaviors away—for my own sense of security. 

I didn’t want to admit it.

The first time Mom displayed illogical, extreme anger and agitation, I was so shocked I literally just stared at her as she railed against our home and its inhabitants. It was such a startling event, I remember it very clearly even now. She lashed out loud and long—she even CURSED!!! MY MOM!!!—and I tried at first to rationalize her into a calming state. Rationalization with dementia is the absolute worst thing you can do, because these flashes of aggression are completely illogical.   

Completely restricted at this time, Mom only leaves the house when accompanied by one of us, and no longer has control of anything important. She has lost her cell phone multiple times, and it’s to the point now that she doesn’t even have one. She obsessively organizes everything—purse, bureau, ottoman—and puts things in different places “for safekeeping”. We—particularly Sweet Husband—have become masters of finding little things she is safeguarding all over her rooms. 

Helpful Hints For Your Home

Minimize. Minimize. Minimize. Literally everything.

Mom now has an almost empty purse to play with—everything important and of value is kept separately by me. The same is true for all of the financial paperwork and anything I might need in the future. I slowly removed everything important out of her den over a period of time after she went to sleep, so she wouldn’t notice a big difference. 

While some people suggested—and many people do—putting in video cameras to track her movements when we weren’t in the same room, we refused to do this. It just wasn’t how we wanted to live. We do, however, have loud bells on the doors that go outside, so we can hear it if she tries to leave the house, and even when she is just moving through the house. 

Frankly, the kitchen is our biggest concern with the dementia. We worked diligently over a long period of time to transition her out of using the kitchen. This was discussed in a previous blog, and helped her maintain her dignity while unknowingly being removed from all kitchen activity. At this point, she doesn’t even venture into the room, but has been conditioned to ask us for beverages or snacks. I’d rather she use me as her server for everything she eats and drinks, instead of me worrying about her trying to make toast and a cup of tea herself. 

Helpful Hints To Maintain Independence

One of the things Pop stressed while he was healthy and we were moving into my caregiver role was the importance of maintaining their dignity as much as possible. I freely admit that this has taken a backseat to safety and health many times over the years, but it is always in my mind. 

Dignity is why Mom still has her favorite purse with her wallet in it. Independence is why her closet is set up with complete outfits on hangers so she can choose on her own, and the reason she chooses her own personal hygiene products at the store. 

In the beginning, Mom attended Adult Day Care three days a week, with a private nurse the other two days. These were efforts to maintain her independence, since she was participating in activities and socialization with other senior citizens during those three days, and going to the store and out to eat with her private nurse.  She felt vibrant and vital by having these different opportunities. 

Helpful Tricks And Devises

Duplicate stuff. That’s my pro tip for the day. How could Mom possibly have her wallet when she hides important documents? Everything in it is a photocopy of the original—which is in my possession. Same for her “favorite” tea cup—there’s more than one. Her clothes? Duplicates of the pants she prefers, and multiples of the style and brand of blouse she likes. I bought her favorite shoes in three colors, too. 

Back to video cameras in the house. We do have one. The most concerning time for me is nighttime. She doesn’t sleep as well as she used to, and sometimes doesn’t comprehend what time it is, so she gets up at 2 am thinking it’s mid-afternoon. From 10 pm to 6 am, we sleep…but she doesn’t always stay asleep. We needed a little reassurance about her location because of the dementia. We bought a baby monitor and put it by her bed. This way, we can hear and see when she gets out of bed. It doesn’t show us where she is going, but it’s usually the bathroom. I can stay in bed and watch to make sure she returns to bed in a timely manner, or I can go investigate. It has afforded me some comfort while I am sleeping, that’s for sure.

Remember Who They Were

Forgetful didn’t bother me, repeating herself didn’t bother me, even the bladder problems we now face don’t really bother me. It’s Mom. But the suspicions, delusions and anger—those bothered me a lot. Don’t take the personality shifts and aggression personally. I did, at first, and it did no one any good. It wasn’t about me at all, and it isn’t something she can control. Once I came to terms with that, everything became manageable.

When she is drifting, I try to keep Mom feeling grounded with conversations about the past. Depending on her cognitive abilities at any given time, I go as far back in history as I need to. Sometimes we talk about when she was a child, and sometimes we literally go through the family tree talking about each person individually. 

The important thing for me is to keep that brain functioning at its peak performance for as long as we possibly can. Mom lives a wonderful and rich life—I not only try to remember that, but I try to help her recall it’s beauty and depth. I try to keep her with me. Always.

THANK YOU FOR READING THIS FAR

Wow! You made it! Thank you for reading about how to react to a dementia diagnosis.

Hey, since you’re here! You may as well check how to resolve family conflicts over eldercare, here! Or, check out our other topics here! Either way, I appreciate you!

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