Hi! I’m Yaz, a dementia caregiver to my mom, a housewife, runner, sister, and Tia (auntie). It’s not always in that order but I love all those titles. I want to share how I became my mom’s primary caregiver January of 2017. She had been diagnosed with dementia in 2016 but I have to take you back to 2009 to when we believe it all truly began. You see that was the year my dad passed away from cancer after a year long battle with it. My parents had been married 35 years and had actually known each other since they were kids growing up in Chile.
Shortly after I’d been born we left Chile and eventually came to the U.S. as refugees. My brothers were both born in the states and my parents accomplished the American dream of a better life. They were able to buy a house and make it a home (which we still own) We eventually bought/moved to a bigger house in a nicer neighborhood. Shortly after though my middle brother and I moved out to find our own places before buying our own homes.
We had family dinners fairly regularly and still lived pretty close to our parents. They really instilled togetherness and wanted us to remain close since we had no other family near us. Fortunately, my brothers and I are pretty close, so it hasn’t been hard to do. Yes, we do drive each other nuts sometimes, they love to give their big sister a hard time but hey, we are siblings and that comes with the territory.
When my dad passed, my Mom was a wreck. She had always suffered from anxiety from what I can remember but now it was through the roof, add in depression and it truly became a recipe for disaster. My youngest brother was still living at home at the time so that helped a little. We had promised Dad that we would always look after his sweetheart. We have prided ourselves on the fact that we have kept and honored that promise. We took turns making sure she was ok: taking her shopping, making her dinner (or taking her out to eat), driving her to church and calling her several times a day.
Even with crazy work schedules and fiancees (at the time) we kept Mom busy. My middle brother got married first at the end of 2009, while I got married the following Spring. The celebrations helped a little bit. We hadn’t noticed too much change in Mom with the exception of the heightened anxiety.
I have to say, Mom was always a little quirky and we attributed that to her not growing up here in the states. But slowly we started seeing more paranoia, bigger burst of anger and repetitive stories. In January of 2012, she started babysitting my nephew and it seemed to really give her purpose. Mom was actually doing really well with him and had established a schedule for herself. It was so wonderful to see her so happy. She had always looked forward to grandchildren.
Then in 2015, my second nephew was born and suddenly she had a new baby to look after. My older nephew went off to preschool so she wasn’t watching him anymore but somehow this new arrival was different for her. The little things suddenly became big things. Mom would complain to me that they left the baby with her for an excessive amount of time but would tell my brother to let the baby stay longer. She had been a great cook while we were growing up always making all kinds of yummy foods, yet somehow she said she couldn’t remember how to make black beans.
During this time frame, I had asked her if she could help me make pan amasado (homemade Chilean bread). She said she didn’t know the recipe. Mind you, she’d been making this bread since she was a young girl helping her mom out in the kitchen. My brothers and I began to compare notes and trying to find explanations for her behavior and we couldn’t come up with anything. We hadn’t even considered dementia, especially since Mom was so young (in our eyes) at 66 years old. The bread incident for me was a tell tale sign something was not right but my brothers weren’t there yet but soon had their own incidents that changed their minds.
In May of 2015, my kid brother got married in Northern California. My mom was so happy leading up to the wedding because we all adored his bride to be. When we were getting ready for the rehearsal dinner at the house we rented, she was beyond upset and did not want to take a shower. I asked her what was wrong and it turned out that she had burned herself. She couldn’t figure out the shower and turned it the wrong way. I offered to help and that seemed to make the situation better.
The next day, as we were getting ready for the wedding, Mom told me she was having problems with her makeup and needed me to do it for her. This moment is when it became undeniable that something besides the depression, anxiety or confusion was wrong with my mom. She had always loved doing her own makeup. She loved getting ready for the day and especially for special/important events. This is not the woman I knew. I told my brothers we needed to look into it further after the wedding.
After being back home in Southern California and having a nice time at the wedding, it seemed that everything began to happen at once at a higher rate. She started calling us franticly that someone had gotten into the house and taken her dog. When we questioned her for more details, Mom would respond, “oh never mind, she’s right here.” Then she would tell us that people were watching her through out the house. We realized that Mom was referring to all the picture frames she had on the walls in the house. She would nod at a picture frame and say, “look but don’t let them catch you, they’re watching us.” Magazines and books were also not a safe thing because if there was a person on the cover, they too would “watch” her.
The final straw was when she went on her daily walk/run. Mom was all done and walked into the house. Unfortunately, the problem was that it wasn’t her house! For some context, her neighborhood is pretty cookie cutter and several houses look alike. The house Mom walked into was 2 over from hers and did look very similar. Fortunately, the neighbors were phenomenal, and didn’t yell at her as she was yelling at them to get out of her house. They suggested they call the police to sort this all out and Mom agreed. Our neighbor across the street found out about the mix up from her daughter who had been over that house on a playdate. She told her mom that Carmen (my Mom) was in trouble and needed help.
The police showed up fairly quickly as our neighbor was heading there as well. She explained to them that Carmen must be confused because she actually lived a few houses over. They walked my mom over to our house and used her own keys to open the door. Mom seemed to have calmed down by then but was extremely embarrassed. After our neighbor got my mom all settled in, she quickly called my brother to tell him what had just happened.
Mom didn’t tell us anything, but was extremely upset with all the neighbors for calling the police. She said it was as if she was some sort of criminal. We told her we knew what had happened and that they didn’t think that. We explained, they only wanted to help. She would no longer watch my nephew because it obviously wasn’t safe for either of them anymore. We were able to get her an appointment to see a neurologist with in a few weeks of the incident.
The doctor asked her several questions and quizzed her during the visit. She gave Mom the “clock” test which was rather interesting. When she was done, the doctor said the word that would change our lives forever, dementia. What was extremely heartbreaking was that Mom asked her doctor if there was anything she could do to get better. The look on my mom’s eyes when she was told no (and that it would progress) still makes me teary eyed. Mom looked so defeated. I told her not to worry. We would deal with this as we always had, as a family. That seemed to help ease her a little bit as I drove us back to her house.
This is how it began, we were on a new journey that none of us had ever faced. We would be making decisions that would affect all of us and unbeknownst to me at the time, aside from my mom, it would impact my husband & I the most. Dementia: it’s how I became a caregiver, it would change our lives forever.