When Dementia Won’t Die…
I have several friends walking the paths of Crazytown with me. It’s a good thing that we have each other to talk to, because Crazytown can be a very lonely and isolating place to spend time. One very dear friend is on this path, and a recent hospitalization is sending her beloved mother off that fast cliff where dementia speeds up and reality slides away.
She’s entering a part of Crazytown not yet visited. It’s scary and sad as hell.
Dementia won’t kill anybody. It’s too much of a bitch to finish them off—it slowly and systematically robs them of their dignity and their personality, but it won’t serve the final, fatal blow.
It just keeps hammering at them—hammering at The Mayor—stealing all the joy and memories we have.
Mom is in this ugly situation. She is the healthiest 93 year old on earth, which is now working against her. Dementia keeps getting slowly worse, but her health remains almost perfect.
She’s disappearing. But not dying.
Statistics Following Diagnosis
We’ve talked at length on my blog about the various stages of dementia, and the typical period of time your loved one will spend in each stage. The salient fact is that nobody really knows. What could be “normal” according to these statistics can be markedly different from what you or I experience with our loved ones. So I present these statistics as guidelines, not really “rules” Captain Sparrow, so that you might have some basis to go off on when mapping out your life.
What are the stages?
The seven stages range from “pre-dementia”, when you are just starting to notice some very mild cognitive decline, to the last “very severe cognitive decline” seventh stage, during which time things can get so bad your loved one will forget how to chew and swallow. Yeah…it gets pretty ugly.
How long is each stage normally?
Can I just say “too damn long” and move on? You want more specific information? Okay…from diagnosis to death we are looking at an average of ten years. The early stage—when you first notice cognitive decline—normally lasts from two to four years, whereas moderate dimension can go from two all the way to ten years. Severe dementia, which is where I am right now, can range from about one to three years, and will end with your loved one being bedridden and ultimately succumbing to something else.
How do you know you’ve transitioned to the next stage?
I’ve got several resources for you below so you can learn more about the different stages, and what to expect during each one. The thing to remember is that dementia is a very fluid type of disease—people float from one stage to the next without anybody really noticing. All of a sudden, literally today, Mom forgot how to walk. I’ve never seen this symptom before, and all it took was me reminding her how to move to get past it, but that loss of memory of something so basic was a cold slap in the face reminding me that we are on the cusp of worse things.
How I’ve Changed With Each Stage
So you’ve done plenty of research about the different changes you can expect to see in your loved one. You’ve considered keeping them safe at home and when they need to transition to an assisted living or skilled nursing facility. You’ve focused all of your energy and passion on taking care of them. What about yourself? How do the different phases of dementia change how you are as a caregiver? I’ve talked about how The Mayor job has transitioned over the years, and it’s important for you to recognize and anticipate these changes:
More time with every transition
In the beginning, Mom might forget where she put her keys or who was married to whom, but she was relatively safe and could be left to a moderately independent life. As we transition from mild to moderate and now severe, it is requiring more of my time. The moderate stage was probably the worst, because she was still in my house, but wasn’t safe even to sit alone. She was hiding things, having delusions and getting up at night trying to leave the house. It required much more of my time, and Sweet Husband spent many nights sitting alone on the couch while I comforted Mom in the den.
More energy with every transition
The more I need to do for her, the less I can be my authentic self around her. Before I enter her room now, I stop at the door and take a few deep breaths. I leave everything at the door—problems at work, pressures at home, errands that need doing, appointments I need to make—so that I can focus all of my attention on her, and on being the best visitor I possibly can be. She can’t really participate in any serious conversation anymore about home, family or work, so I don’t bring any of that up. I am present with her 100%, and give her the most positive, upbeat version of myself that I can summon. It’s exhausting, but it’s my job.
More doctors with every transition
As things start to decline cognitively, they will also decline physically. At this point, however, you need to take a much more proactive role in your loved one’s medical health. Mom had a urinary tract infection a few months ago, for example, but she didn’t mention symptoms to anyone. It fell to me to interpret the things she was telling me and share them with her care team.
We’ve Reached “Severe.” Now What Happens?
Welcome to the party. We’ve got cookies.
Here we are at the absolute worst part of the absolute worst disease I have ever had to handle. I’ve said it before and I say again: I would do Pop’s multiple cancers 100 times over before I would do Mom’s dementia one more time. It’s that bad.
Sweet Husband’s mother slid fast and hard into severe dementia. She hovered in that horrific moderate stage for way too long—hallucinating and having scary delusions during the day and night, scaring his sisters and making it incredibly difficult to care for her. But the end of her road was relatively brief. It was a real gift, though they didn’t see it at the time. Once she left the last skilled nursing facility into a memory care facility, she declined very quickly, ending up prone in bed endlessly, not eating, drinking or communicating with anyone. While it was horrific to witness, as a stage it was quite fast. I think she just missed her husband.
Mom is inching into the severity of dementia at a maddening rate. Her pre-dementia stage was quite long and drawn out, virtually unnoticeable until after Pop was gone, but moderate lasted many years. Now we have fallen squarely into the severe dementia phase, and it is the worst thing to watch.
Mom cries a lot as the confusion hits her brain, and she is quite cross and impatient with the nursing staff at her facility. She’s forgetting key pieces of clothing when she dresses herself, and goes to bed and odd times during the day. Today, she forgot how to walk.
Pass me a cookie.
How To Keep Your Energy And Passion When It Won’t End
I mentioned above how I “steel myself” before entering her room every day. Some days it is easier than others, but that tiny knot of fear is in my belly every time before I open the door, because I don’t know who will be on the other side.
Then, there’s the smell. I don’t know if it’s the smell of disinfectant, despair or death, but the entire building has a cloud over it that I have to penetrate and push off before I enter her room. I have Lysol and Febreeze in her room and I spray them almost every day, just to bring a springtime scent into the area.
By preparing myself mentally and dealing with the smell that depresses me, it is easier for me to enter upbeat and positive, so I can begin with a happy visit. It doesn’t always work, and I’m met with tears or anger, but more times than not, how I enter the room dictates how the entire visit will go.
Plus…I always bring treats. Always. I was raised to show love with food, so that is what I do every single time I visit. Every visit I bring a banana—her favorite fruit. Then I’ll pull out some cookies or crackers or a chocolate shake. It distracts her from whatever is on her mind, and never fails to bring a smile to her face.
My Best Advice?
Don’t give in.
Don’t let the depressing elements of dementia get you down. Look past the confusion and unkempt appearance and see the person who raised you. Stare deep into their eyes, and remember how they comforted you as a child.
I hate everything dementia keeps taking from my mother.
But I love my mother with my entire soul.
That is what propels me through that door every day with a happy smile.
Don’t give in.
THANK YOU FOR READING THIS FAR!!!
Wow! You made it! Thank you for reading about the long dementia symptoms!
Hey, since you’re here! You may as well check out Part 1, here, or if you’ve read that, check out more dementia problems, here! Or maybe you want to hear more about Pop, 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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Oh! And don’t forget to check out my video series by CLICKING HERE!!!
Resources
https://www.compassionandchoices.org/resource/dementia-7-stages
https://www.verywellmind.com/the-7-stages-of-dementia-symptoms-and-what-to-expect-6823696
https://myallamericanhospice.com/what-are-the-stages-of-dementia/