Understanding Dementia

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by RI Editors

Today’s guest essay in our Peculiar Minds series comes from Cassandra. 

It’s Monday morning; my day to take care of mom. I walk into her house to find her sitting on the couch, phone in hand (on speakerphone). She is attempting to contact her pharmacy to refill a medication and quickly becomes confused with the automated system.

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“Hello? Hello?” she says to the recording. As I listen, I prompt her to follow the instructions by pushing “3” to speak to an operator. Instead, she pushes “8” and is led to another recording.

“Hello? I need to talk to somebody! Gosh!” she says into the phone, exasperated.

“This is so much more confusing,” she continues, pushing random buttons on the keypad. “This is why I don’t like this thing, it’s confusing. I’d rather go in and show them. I wish you would support me and drive me down there.”

Every conversation turns back to driving. It has been a sore subject for her ever since she was cancelled as a driver.

This scenario continues for several minutes: mom, pushing buttons and talking to recordings while I try calmly to redirect her to the correct button. Most of the time it’s as if I’m not even speaking; if she hears me at all there is no acknowledgment. Eventually, she becomes agitated with me and glares at me, stating, “I am too calling it right! I am too pushing the right one! This is so much more confusing!”

With that, she hangs up the phone and storms off down the hallway and into her room.

This is just one of the many challenges in caring for a person with dementia. With mom’s rare form of it (known as semantic dementia), we have many. Some days it is getting her to eat; she has become pickier than my one-year-old! Part of this is because she doesn’t recognize most foods anymore. Her senses of smell and taste have been altered with this disease. Personality changes, loss of social inhibition, rigid and obsessive behaviors, and loss of recognition of people and objects are just a few other challenges we face.

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Communication with mom has become an enormous struggle. Once upon a time, I could talk to my mom about anything and everything. Nowadays, conversations with mom are very one-sided with whatever is on her mind (we have the same conversations day in and day out…my dad calls it “Groundhog Day”). Her brain has lost the ability to make sense of meanings of words. We could have a conversation about her, right in front of her and she wouldn’t have a clue.

The lives of me and my family have drastically been altered over the course of the past few years. When I first learned of my mom’s diagnosis last year, at her young age of 50, I couldn’t comprehend the diagnosis. I knew what dementia meant; or, at least, I thought I did. My mind was in a fog and I didn’t know where to turn. I felt lost and confused. The diagnosis explained a lot of things; mom had been changing significantly for a few years prior to her diagnosis. Looking back, I think deep down I knew what was to come, but I had been in denial. I couldn’t bring myself to hear that dreaded word: dementia. I wasn’t ready to face what that meant.

As I learned more and more about the disease, and the prognosis of the disease, I became more and more depressed. How would my family ever be able to bear such a burden? How would I watch my dad deal with the loss of his sweetheart? The burden seemed too much to bear.

One day, not too long after her diagnosis, I was feeling particularly discouraged. I was sitting at my computer while my boys were napping and I decided to start a private blog for myself in an effort to collect my thoughts and express the emotions I was harboring inside. I had my favorite Hilary Weeks CD playing softly in the background and the lyrics struck me:

“In the moments when no earthly words can take away your sorrows and no human eye can see what you’re going through, when you’ve taken your last breath and done all that you can do, he will lift your heavy load and carry you.”

For the first time since I had heard that word (dementia), I allowed myself to break down and have a good cry. I cried for my mom; for the person she was and the person she had become, for the life that was being taken away too soon. I cried for my dad, for my family. I cried for fear of what is to come and for the emptiness of not having my mother.

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In that moment of weakness, I dropped to my knees and poured out my sorrow to my Heavenly Father. And an unexpected thing happened. In that moment, my perspective changed. A specific thought came to my mind. What can I learn, and what can I do to become a better person, through this adversity?

My mom’s diagnosis is tragic. Nothing will ever change that. Yet despite the tragedy, I can, and must, find a way to bring something positive to the table and become a better person, despite the sorrow and hardship I feel.  It is my time to serve, to learn compassion, to develop unconditional love and patience. This situation will mold me in ways that otherwise may not have happened. I am learning to rely on my faith and my Savior and in His infinite love to carry me through.

Is it easy? No. Every day brings a new challenge with dementia. It is a devastating and heartbreaking disease to witness. But keeping an eternal perspective keeps me focused on the job I need to do. I can’t wait for the day when my mom is whole again, when she will hold me in her arms and thank me for loving her.

Cassandra_Dementia guest post_pic4Cassandra Jones wrote stories as a child, winning several awards. She earned degrees in Fashion and Early Childhood Education. Going to the beach or camping is among her joys in life. Her greatest joy is spending time with her family as a stay-at-home mom to a step-daughter, an adopted niece and 3 biological children. She’s been married to her best friend for nearly 10 years. Cassandra blogs at Journey With Dementia.


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5 Responses to Understanding Dementia

  1. Bonnie says:

    My father suffered post-traumatic dementia after a series of head injuries. It was a slow-moving process, actually beginning with a head trauma in his early twenties, and continuing with a major head trauma every decade of his life. A pituitary tumor that ruptured in his brain. A motorcycle accident. A fall from a forklift onto a concrete floor. He was an impatient man most of his life, and I always thought that was his character. I’ve wondered since his death if it was one of the many, many effects of his traumas. It was a sincere challenge, especially for my mother, because he was often combative. So very, very hard. I especially loved your statement that the spirit shared with you: what can I learn? The Lord really can consecrate this rough experience for us. There is nothing that Satan can throw at us that God can’t catch. Bless you for your tender care of your mother.

  2. Michael Harrington says:

    I am so blessed and grateful to have the wonderful niece that Cassandra is, to love and care for my beloved little sister. To be able to put such a beautiful perspective on such a heart-rendering family tragedy is a strength to me. I am so proud of her, and I know my sister is too, although she has now been stripped of the ability to express her gratitude. How beautiful to know she will have that ability restored to her in the Celestial Kingdom. Thank you, Cassandra for reminding me of that!

  3. Jendoop says:

    Cassandra, you are a great example of service ad dedication to family, as well as facing a difficult issue head on. Your blog is great, and I love that humor is a big part of your attitude towards dementia.

    Your post leads me to think about these issues of our brains, if they’re temporary or permanent. The eternal view that you have of your mother, and this short time where she is not herself, is one that I would like to develop for others, mental disorder or not.

    Thank you for sharing, and informing us about this. I think it waits in many of our futures.

  4. Recogneyes says:

    So admirable that you can keep such a positive attitude considering your situation.

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