Cassandra Jones Caregiver Story - Purple Elephant

I remember when I was growing up, my parents use to always joke around that someday we (kids) would be changing their diapers. They especially loved to bring this up when we were being obnoxious or difficult.

“It’s okay,” my dad would say. “One day you’ll be changing my diapers and I’m gonna make it a big mess for you.”

I never took his joking seriously at the time. I doubted I’d ever have to change any diapers besides my own babies. My parents were young when they married and started their family; mom was 20 and dad was 21 when my twin brother and I were born. I always assumed that if it happened at all, it would be many long years (when I was an old woman myself) before I’d ever have to face caring for my parents. I was young, naïve and idealistic. I assumed I’d have my parents around for a long time.

Unfortunately, life doesn’t always go as planned. When I was in my mid-late 20’s, my mom started having some personality and behavior changes. My mom and I had always had a close relationship; she took care of me when I was pregnant and sick with my first baby and she was the type of mom who was always there to lend a listening ear and advice when I needed it. As I grew into womanhood, my mom became my best friend. When the grandbabies started coming, she LOVED being a grandma. Her grandbabies were her pride and joy!

By the time I was pregnant with my second child, however, mom was losing interest in spending time with her grandchildren; she seemed to always be “too tired.” She sometimes said and did things that were a little off putting and out of character. I can recall several times that mom seemed distracted and disinterested when I called her and asked her for advice on a matter; she became very preoccupied with herself and what was on her mind rather than what I needed to talk to her about. Mom, who was once a master in the kitchen, began to alternate the same two meals for every Sunday family dinner. It became a joke between my sister and me,

“What will it be for dinner this week: tacos or spaghetti?”

We didn’t think too much of it at the time because mom was seeing a doctor for a heart murmur (which she was born with) that had progressed in severity over the years. She was at the point where she needed a surgery to repair the valve and we attributed her fatigue and selfish behaviors to her heart. Still, I began feeling a bit resentful towards her for the rift that I was beginning to feel between us.

In June of 2009, mom had her heart surgery. It was a new procedure which meant mom was the guinea pig. She was under anesthesia for many hours and had some internal bleeding that they quickly took her back in to the operating room to repair, but other than that the surgery seemed to be a success. I was relieved when the surgery was over and anxious for her to get back to her normal self.

Except that she didn’t get back to her normal self. In fact, things got worse. That fall, we started noticing that mom was forgetting names and faces of friends when she’d run into them in public places. Sometimes she would forget words for things. Her doctor chalked it up to menopause. It wasn’t until early the following year that we knew something more than menopause was plaguing mom. That January, mom’s mom passed away very suddenly. When I received the phone call about my grandma I immediately rushed over to my mom’s house; I knew she must be falling apart because she was extremely close to her mother. When I arrived at her house, however, mom was drying the last of the tears that we would see for the loss of her mother. Throughout the funeral preparations (and the funeral itself), mom shed no tears and showed very little apathy. She would talk about inappropriate things during our time of mourning and at the funeral she did not recognize her brother-in-law, whom she had known since childhood. All of these behaviors were strange and left our family wondering what was “wrong” with my mom.

Over the next couple of years, mom’s behavior continued to worsen to the point that she was put on a work suspension; she was a dearly loved Head Start teacher and always had excellent reviews in the past but her performance was suffering. Friends began to distance themselves from her and other friends from church asked us if everything was okay with mom, reporting that they’d run into her at the store and she didn’t know who they were. My dad took mom to many doctors and specialists, all of whom had no explanations of mom’s oddities. Menopause was blamed quite often. Another doctor referred her to a psychologist. One doctor did a CT scan on mom’s brain and, despite the images showing shrinkage in the frontotemporal regions of the brain, concluded that she did “not have Alzheimer’s or dementia.” We were left with confusion, helplessness and despair.

Finally, in March of 2012, my dad was able to get my mom into UCLA neurology for an assessment. After a few hours of questions for my dad, observations and tests with my mom and a review of the CT scan, they confirmed the diagnosis we had feared the most: dementia; specifically, semantic dementia. This form of dementia is in the same family as Alzheimer’s, but it affects the frontotemporal regions of the brain.

During those first few months after her diagnosis, I learned all I could about the disease by reading books, medical websites and joining online support groups. There are no words to describe the pain and devastation I felt as I learned what was in store for my mom (and for my family). Some of my family members didn’t want me to share what I had learned; it was too difficult. I felt burdened and overwhelmed with the knowledge I had gained. The first few months were very dark, dreary and difficult to process and I wondered over and over, why my mom?

There were many lows, but I eventually resolved that I was going to be strong for my family. I knew that my mom needed me (whether she knew it or not) and that my dad was going to need me even more. I felt like it was up to me to be a strength to my family and help them get through this. I also felt prompted to begin blogging about our family’s journey and open it up for others who were traveling on this road of dementia. Not only has it been therapeutic for me to open up and talk about my mom’s illness, but it has also helped to raise awareness of this disease to our friends, family and others around the world.

Fast forward to today…I am not changing diapers. Yet. But I know now that it’s no joke; it is a reality that I will likely face in the near future. My mom is 54 years old and requires constant supervision and care. She still lives at home with my dad (his plan is to keep her there until the end if possible) but we have a team of volunteers and caregivers who help to make that possible. Every other day, I am at her house to assist her with showering (and it’s a fight everyday). She dresses herself but wears her clothes mismatched, inside out and backwards-which actually requires extra skill to button pants inside out! Sometimes she will put on shirts or even dresses over her outfits. She paints her eyebrows with blue eyeshadow and plasters foundation on so thick that you could peel it off. Her days consist of sitting on her bed while waiting for medicine and meal times, waiting and watching for my dad out the living room window and playing card games on the computer. She will only eat 2 things: peanut butter and jelly sandwiches and shakes (Ensure). When my brother comes into town for a weekend visit, mom doesn’t know who he is; she only remembers a few family members that she sees on a regular basis. My dad has named each day “Groundhog Day” because she talks about the same things over and over. And over again.

But we listen to her, over and over, and do our best to keep her happy and comfortable. Because that’s what you do when you love someone. She slips away more and more each day, but I have learned to love and cherish the woman that is left before me.

If you would’ve told me 10 years ago that this is what my life would look like at age 34, I would have never believed you. Dementia is something that only affects old people, right? The older I get, the less I know.


Cassandra Jones

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