Dementia Sucks

It’s true, you know. The title says it all. When someone asks, “How’s your mom, Lauren?” That is my response. Nothing more, just, “Dementia sucks.” And it does. It really, really does. I would rather she have cancer than dementia. Seriously. At least she would remember how to write her name. She would remember how to go to the bathroom. And she would remember her loved ones.

Dementia robs the sufferer of their dignity and then, later, their memory. It also does no justice to the caregiver. It sucks for everyone involved. Here are three things I’ve learned…

Laughter is the Best Medicine

In hindsight, the dementia had been there for some time. I still find myself remembering little things that should have tipped me off. It’s amazing how clear things look after the fact, right? It was a tough transition for us all; moving my husband and dogs into my mom’s life, but it had to be done. I learned quite quickly that it was easier to laugh about it than cry about it. Having a sense of humor was an enormous asset. I’m not saying I didn’t huddle in a corner balling my eyes out every so often, but having a sense of humor was an enormous asset. It made no sense to dwell on something I could not change. All I could do was move forward and if you could get a laugh or two out of it, why not?

“I just stopped your mom from heating her soup up in the dishwasher.”

True text I received from my husband while I was at work.

The importance of socialization for a person with dementia should not be underestimated. Keeping their brain, and to a lesser extent their body, busy and active is the best therapy they can get. My attempt to act as activities director at the household wasn’t enough. She needed more stimulation. Persuading her to attend an adult day care was exhausting. I finally convinced her to try it and guess what… she loved it! There was a daycare right here in town and between my husband and I taxiing her she went a couple times a week. It was good for her and gave us a break.

“Is that your brother?”

Question asked by a fellow daycare client to my mother when my husband picked her up one day.
The Art of Acquiescence

Mom and I never lived together well. Growing up, she was quite strict and I was a typical, sarcastic teenage. She’s my mother and I love her, but cohabitation was not our thing. Add to the mix a husband and nutty canine. Under different circumstances it might have made for a good sitcom, but the most challenging feature of our living situation was constantly having to be wrong even when I knew I was right.

Skills of deduction, recall and rationalization were simply not there anymore. Like many sufferers of dementia Mom developed a lot of weird behaviors and began hoarding. Her target item was toilet paper. She’d hide rolls of it in her bedroom and she’d wad it up in her pockets and even her purse (which she seemed to think was normal to carry around the house). I’d put out a brand new roll in the morning and within two hours it would be gone and she would blame me for taking it! Confronting her with the evidence did not help; her brain could not acknowledge what was right in front of her eyes.

“Your mom can’t find any toilet paper. I looked in all the likely places and unlikely, but to no avail.”

“Did you check under her bed?”

Texts exchanged between my husband and I.

There’s a phase in the patient’s decline where their behaviors are uncontrollable. They get angry. They get nasty and they take it out on the caregiver. I learned that it was easier to accept the fault for whatever the issue was. It was the only way to extinguish the impending fire, which would often include bouts of anger and depression. During this time my mom said some really horrible things to me. She’d scream and yell and push my patience level and I would acquiesce.

It Is What It Is

The stupid corona virus and the shut-down put an end to daycare and any sort of social intercourse that we believed was so important to her quality of life. Our sitcom-like household was becoming a thumbs down tragedy. My husband would look after her while I was at work and then I would take over when I would got home. Most days we simply ran on auto-pilot. We were exhausted.

There are many lessons to be learned, but the most significant is that there is nothing you can do. There is no fix for this disease. I spent so much time wondering how this could have happened. Could it have been prevented? My mom was an intelligent, hardworking registered nurse. She always kept busy. After retiring, she volunteered for different organizations. She attended church. She babysat her grandchildren. She was active. The reality is that crappy things happen for no reason at all and stewing in denial is the worst thing you can do. Accept it and move on.

“I’m alive, right?”

Asked during one of my visits and with sincere interest.

Mom now lives at an assisted living facility on a unit for people with dementia. At the beginning, she thought she was living in a hotel at the beach. (Wouldn’t that be nice?) She has progressed from her crazy, nasty stage to a crazy, calm stage. Blissful ignorance. It could be worse. It could always be worse. Her memory continues to wane, but through it all she always remembers my dad. She misses him and often reminds me to bury her next to him. Like, where else would I put her?

As a caregiver I found the following helpful:

The Caregiver’s Guide to Understanding Dementia Behaviors https://www.caregiver.org/resource/caregivers-guide-understanding-dementia-behaviors/

The 7 Stages of Dementia https://www.aplaceformom.com/caregiver-resources/articles/dementia-stages

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One comment

  1. Dementia sucks! My My Mom has had it for many years now. Due to covid and not being able to visit her, she no longer knows who I am. I’m happy she is healthy and still can get around okay. I’d rather that than her being bed ridden. I try and laugh at what she says. Other wise, I would cry. I feel your pain Lauren. Dementia sucks!

    Like

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