Saturday, March 10, 2012

The Beginning

It's always been hard for me to verbally express how I am feeling. Now I'm not talking about if you cut in line in front of me at the grocery store, or if you have something rude to say about my kids. In those situations, I have no problem telling you exactly what I think. But when it comes to things that are near and dear to my heart, things that really dig into my emotions, it is a different story. I tend to bottle those feelings up inside of me. I find it easier to express my thoughts and my emotions through writing, rather than through spoken word.
My mom has been acting funny for the past few years. She was born with a heart murmur, and over the past several years, her condition had worsened. It eventually got to the point that she needed a repair on her leaky heart valve. In order to avoid open heart surgery, she opted to try a new procedure where the doctors went in labroscopically to repair the damage. Because this doctor had never before done this procedure, there was a long waiting period until the actual surgery took place. During that wait time, my mom began to change. She began to tire easily, she lost a lot of energy. She developed a lot of aches and pains. She started losing interest in her grandkids, which she attributed to her fatigue and body aches. All of this, she said, was a result of her heart condition. The surgery would make it better, she assured us. We were frustrated with the changes we saw in mom, and we all counted down the days for her surgery, in hopes that the mom and grandma we once knew would return back to normal.
Fast forward now to surgery, June of 2009. The new procedure was a success-as far as her heart was concerned. It took longer than anticipated, totaling 12 hours of time under anesthesia. She had a little bit of internal bleeding, but they immediately took her back in and corrected the problem. Nothing seemed out of the ordinary during those first few weeks of her recovery. Within a few months, however, we started noticing problems with her memory. She was becoming a little forgetful with names and faces. She would run into friends at the grocery store and draw a blank on who they were. When discussing this with her doctor, it was concluded that there could be several reasons for her forgetfulness. Maybe it was menopause. Maybe it was the surgery; sometimes after a surgery (particularly a heart surgery) and anesthesia, it can take a while for people to get back to "normal". They say that memory can slightly be affected and that it could take a full year for a person to be back to their normal selves. We waited, trusting in the doctors, thinking that it was just the aftermath of anesthesia.
Moving forward: January of 2010. My mom's mother very suddenly passed away. My mom was extremely close to grandma. As soon as I got the phone call, I raced to my mom's house, sure that she was falling apart. When I arrived at her house, I could tell she had been crying. She went to her room to do her hair and make-up so that we could go grandma's house, where the family was gathered. And by the way, nobody else bothered to do their hair and make-up before going over. We all thought it was bizarre behavior. As she went back to her room to get ready, she wiped away the last of her tears, and I mean the last of her tears. Throughout the next week and even at the funeral, mom shed no tears for her beloved mother.
At grandma's house, the family all mourned her sudden death and voiced their concerns about grandpa (who was dying of Lou Gehrig's disease). Mom voiced her concern about the charter bill and my sister's car payment, which was late. She rambled to my cousins about her pioneer ancestors, while we all just sat there crying and trying to make sense of what had just happened to grandma.
At grandma's funeral, my dad's brother came to offer his condolences. My mom looked at him and said "Remind me who you are again?" She could not place her brother-in-law, whom she had known for over 30 years.
I think that was the turning point for us in realizing that there was something wrong with mom. Something really wrong, more than just the "affects" of surgery wearing off.
As time went on, mom's memory worsened, and her behavior became more and more bizarre. In late 2010, she had an incident at work, which resulted in a temporary suspension and tension between her and her co-workers. She lost focus on any conversations that were not about her, or what was on her mind. In fact, we discovered that there were really only 3 topics that she would conversate about: her problems at work, her health (constant complaints of every ache and pain in her body), and her religion/pioneer ancestry. Every person she came into contact with had to hear the same stories and conversations on one of these 3 topics.
Throughout 2011, her memory continued to worsen. People often approached me to say "I saw your mom in the store the other day...she looked scared when I talked to her...she acted like she didn't know me". We would have conversations at the dinner table, sometimes even about her, and she had no clue what we were talking about. She couldn't focus on what we were saying. She had some very strange social behaviors and felt like everyone was "picking" on her when we would disagree with one of her oddities. This was when my dad began to get aggressive on finding answers to her problems. He went to one doctor after another, only to come out with no resolution. A CT scan in August showed that there was some "shrinkage" in the brain, but aside from writing her a prescription for meds, the neurologist did nothing to help us understand what this meant. In fact, he kind of dismissed it and offered the test results only as an afterthought as he talked about his own experience of heart surgery.
Over the course of the last year, our frustration has grown immensely (to say the least). Mom's condition seems to be getting worse. Her behavior has, at times, driven us on the verge of insanity, and we are getting no answers from any of these "specialists" that we have taken her to see. My dad has had the stress of battling with social security, after she took a leave from work due to her inability to function properly, only to have her denied because the doctors see no reason to sign a disability form. Each one refers us to the next guy, and nobody will take responsibility and sign the forms, even though it is quite clear that she is not in her right mind and is unable to work at full capacity. They are quick to give her drugs, but not so quick to take the time to figure out what is wrong with her.
We began our own research (with the CT scan results as our base) and were pretty much convinced that the damage in her brain was due to a lack of oxygen during her 12 hour surgery in 2009. My sister and I researched "temporal lobe damage" and many of the behaviors she exhibited seemed to coincide with that diagnosis. Problem solved. Now if we could only get the doctors to get on the same page as us and try to figure this out.
No such luck. It's one big game of ring-around-the-rosies. My dad has made phone call after phone call, gone from doctor appointment to doctor appointment, even collected all of her medical records, consulted an attorney, and still at the end of it came out empty handed. No answers. Among the phone calls he made was a call to the UCLA Medical Center, a place where people travel across the globe to seek answers for their medical mysteries. He was able to get an appointment for mom to meet with the specialists there. Finally, a glimmer of hope.
That brings us to this week: mom's appointment at UCLA. At 9:00 am, dad made the drive out to UCLA. At 6:30 pm, he finally made it back home. Granted, California traffic sucks. But he, and my mom, spent a good amount of time with a panel of doctors who actually took the time to access her condition. They looked at her medical history, they looked at her CT scan, they observed her behaviors, they talked with her and with my dad, they asked dad questions, they asked mom questions. They took their time and genuinely listened and showed concern for everything my dad had to say. They are dedicated to finding answers for my mom, for our family.
This is the good news. The bad news is that this is not brain damage from the surgery. Why is that bad news? It's bad news because it means that she has dementia. They are 90% certain that she suffers from a very rare form of dementia, called Semantic Dementia. An MRI will be scheduled in the very near future to get a more clear look at what is going on in her brain. But based on everything we have to say, based on the CT scan, their observations, her medical history and other questions asked and tests they performed, it seems almost certain that it is Semantic Dementia. An MRI will only seal the deal. They sent dad home with a booklet on information about the disease. I read the booklet. I've googled the facts. I've visited several websites. I'm convinced their diagnosis is accurate. The outlook is not so good.
So here I am. I have spent the past 3 days in a fog, as the words play over and over in my brain. Semantic Dementia. I know what this means. We have a very long road ahead of us. I write this blog for my own, personal therapy. I write this blog for all of those who ask what is going on with my mom. I write this blog to get a better understanding of this disease and in hopes to provide answers to others who might find themselves in this situation. This is our journey with dementia.


  1. I am just starting to read through your blog. My mother in law was dismissed about a year ago with I think BvFTD. It's been a struggle and your blog is great for relating to. I plan to share with my FIL and hubby.