Today's guest post is by a caregiver. She would like to be known anonymously as "P.J." Thank you P.J. for sharing this with us!
What's So Funny About Dementia?
I can already feel your indignation. So let me say this:
There is nothing funny about dementia. However, dementia can be funny.
To prove this, let me tell you my story...
Five years ago, my brother and I began noticing that our mother was acting "weird". She would stammer around trying to recall our names. She stayed home more than usual. Her flowers weren't watered.
As time went by, things got a little worse. She forgot to pay a bill. She left the stove on while she took a shower. She didn't recognize her neighbor of 14 years when she met her in the grocery store.
We all have days like that, and Mom was always a little absent-minded. But eventually we had to admit to ourselves that the worst had happened...
Mom Was Diagnosed With Dementia
It was actually a relief to hear the "D" word. Not because we wanted it to happen, but because suddenly a lot more things made sense. Now we knew why she had forgotten our birthdays, why she was always looking at the clock, why she was hoarding cans of tomato paste in her dresser drawer.
We realized that Mrs. Colby next door had probably not stolen Mom's water hose after all.
We also realized that Mom was not safe living at home alone anymore. We found dropped medication in the carpets, old food in the fridge, and chemical pesticides stored in unlabeled containers in the pantry with the food.
I moved in and cared for Mom for almost two years. Soon, she needed more care than I could give her while I worked, so we moved her into a nursing home. We spent the next few months dealing with feelings of guilt and shame. We visited everyday, held her hand and reminded her of her life. We showered her with emotion, cried when she forgot our names, and asked her a million times:
"Mom, do you remember...?"
As the dementia grew worse, she would say things like:
" Of course I remember you, Dexter. You gave me that piano we played at church when your Aunt was picking those peanut butter trees."
See, dementia doesn't just make a person forget their name, or their memories, or their friends and family. It changes how they think and speak too. She FORGOT that Bill wasn't Dexter--her brother-in-law. She remembered the piano correctly. But peanut butter trees?
Dexter's Aunt Viola was picking apples that day. It was a favorite family story, with Aunt Viola realizing she was missing church service, and running in during a song still carrying her basket of apples.
But mom couldn't remember how to say the right words. She replaced the words with others, creating a nonsensical statement.
And whenever this would happen, Bill and I would share a look. This is awful, we thought. We noticed everything like that. But what we didn't notice was during our visits, Mom would get agitated. Sometimes she screamed at us. Sometimes she cried. Oh, how sad, we thought. We would pet her, and promise her anything in the world.
Then, one day, Bill and I screamed at a nurse.
A Lesson Learned About Dementia
Pam was a perky, middle-aged nurse with a terrible bedside manner. Or so we thought. Because when Mom stated some bizarre piece of information to Pam--Pam LAUGHED.
We called her out right then and there. How dare she ridicule our mother? How dare she laugh at this horrible disease that was taking our mother by bits and pieces?
Pam coolly looked at us both and in a calm but stern voice, taught us the most important lesson we would ever learn about dementia.
It Is Okay to LAUGH.
Laugh and others will laugh with you. That is exactly what Mom had done. When Pam laughed and played along with Mom's story, she had broken a cardinal rule. She had made light of this terrible situation. She had also failed to correct Mom. That is what we are supposed to do.
"No Mom, you are wrong. This is how it happened. No Mom, you are saying it wrong...it is supposed to be this word."
And when we did that, Mom would get stressed out. She was trying to communicate, and trying to please us. But all we ever did was cry, get irritated, and correct her at every turn.
But when Pam laughed, Mom laughed. We hadn't heard her laugh in months...and we had ignored it.
Pam comforted us both, and at the same time, told us what we didn't want to admit. The final truth about dementia.
"Your mother isn't coming back. This is who she is now. She can't be the person you remember. No matter how hard you try, you can't teach her to be who she was. But you can enjoy who she is trying to be today. Don't spend every visit trying to force her...just say hello, ask her how she is, and let her talk. And laugh with her. "
Mom passed away in January of natural causes. At the end, she could barely string together two sentences, but she could still laugh.
My final memories of Mom are not so bad. We had great times. Sure, it was sad. But I still smile about the time she told Bill that he needed to watch out for the doctor because he was an underwear thief. Or the time she said that she and Dad bought me at the zoo when I was a baby.
We know so little about dementia. There probably isn't a right or wrong way to handle it. But I like to think of dementia as a big bully, and the only way to take a way a bully's power is to laugh it down. That is what Bill and I chose to do, and I will never regret that choice. The end was still hard, but we laughed down the dementia.
And the best part is that mom laughed with us.
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