Our Dementia Timeline

2007: First noticeable behavior changes in mom. She was tired a lot, began to lose interest in things she once loved and developed some self-centered behaviors. We thought that these behaviors were side effects to a heart condition she had. She had met with a specialist and was put on a waiting list for a surgery using a new prodecure; it was laparoscopic rather than open heart.

June 2009: Mom had her surgery. It went well, except that, because it was a new procedure, it took a little longer than expected. They also detected some minor internal bleeding during recovery and took her back into surgery right away to fix the problem. Total time that she was under anesthesia was about 12 hours. Aside from that, everything was a success and she had no other problems.

Late Summer 2009: This was the time that we began to notice that mom was forgetting who people were. She would run into people that she had known for years, in the store or other places, and she drew a blank on names. We thought it was odd, but figured it could be menopause or possibly lingering side effects of anesthesia (we had been told that it could take several months to recover from anesthesia).

January 2010: Grandma (mom's mom) died. Mom was extremely close to her mom. Aside from the morning of the phone call, mom never shed a tear. Her behavior was very bizarre. While family members were mourning, she was talking about subjects that seemed inappropriate under the circumstances. She seemed to lack emotion, and it drew the attention of extended family as well.

At grandma's funeral, my mom did recognize my Uncle (dad's brother) whom she has known since childhood. She asked, "and who are you again?" She became embarassed when she learned it was her brother-in-law, and of course remembered him once he said who he was. This was alarming to our entire family, and many relatives expressed their concern.

Spring 2010: Shortly after losing grandma, we lost grandpa (her husband, mom's step-dad). Mom continued to show a lack of emotion throughout the process as well as exhibited inappropriate behaviors at inappropriate times. For example, as we all sat in the living room of our grandparent's house, the morning he passed away, grieving our losses, mom turned to dad and started talking about their overdue charter bill.

Summer 2010: We noticed that mom was forgetting the names of objects. For example, at a baby shower, we played "The Purse Game", where you have to check your purse for specific items (and whoever has the most items off the list, wins). Mom was puzzled when she saw the word "calculator" on the list and told me, "I'm trying to remember what a calculator is." By this point, we knew we needed to have some more extensive testing done.

October 2010: Mom had a CT Scan done on her brain, ordered by the network's neurologist. We'll call him "Dr. Wonderful" because both mom and he thinks he is the best thing since sliced bread. Also around this time, mom received a notice from her job notifying her that she was being written up for an incident that had taken place in her classroom the previous school year (which was a safety issue).

January 2011: Dad went with mom to the follow-up appointment of the CT Scan with Dr. Wonderful. They discussed her surgery and Dr. Wonderful spent the majority of the time talking about his own heart surgery. Towards the end of the meeting, my dad asked him about the results of the Cat Scan. His reply:

"Oh, yeah. Well it shows that there is shrinkage in the frontotemporal lobes of the brain. But it is not Alzheimer's or dementia."

There was no further guidance on where to go from there, or explanation of what could be causing the shrinkage. It was at this point that my sister and I began researching what shrinkage in the frontotemporal lobes meant, and we concluded that it must have been frontotemporal lobe damage; a result from the surgery due to a possible lack of oxygen. My dad began attending her appointments with her in attempts to investigate what was going and ordered her entire medical file dating back to 2004.

Mom was also put on suspension from work twice during the 2010/2011 school year. I know she received notification in October stating that they were reviewing the incident; I can't remember exactly when she was suspended the first time, but it lasted probably for a couple of months. She then returned to work and by the end of the school year they had put her back on the suspension. It was a combination of that incident and other concerns that her coworkers had with the way she was behaving in the classroom. Mom felt as if they were picking on her and denied that she was having any problems.

Fall 2011: After much deliberation, mom decided not to return to work for the new school year. She took a temporary leave of absence and tried to get disability due to her "fibromyalsia". Those of us close to her were more concerned with her returning to work due to her mental state, rather than her physical ailments. But she believed she couldn't return because of her aches and pains. She went to a pyschiatrist to be evaluated. Getting the results was another long process; we were given the runaround from her doctor about obtaining the results. A few months later, I spoke with the psychiatrist (who ironically happened to be the same psychiatrist that I have been taking my adopted-daughter to) and he told me that he believed, based on the tests, that she has dementia, brought on by "unnatural causes". At the time, we interpreted that to be attributed to the surgery and was more of brain damage than dementia.

My dad also began the process of trying to get her on disability or social security. Her doctors (neurologist, family doctor, etc) would not sign disability forms as they felt that she was "fine" and did not want to take responsibilty for signing the papers. After months of headache and frustration, my dad finally hired a lawyer to start the process for social security benefits. They sent out their own doctor to evaluate her in early 2012, and they felt that she was "fine" and denied her benefits. (Seriously...are these people even real doctors???) My dad appealed the ruling and was told he may have to wait up to 18 months to get a hearing before a judge.

February 2012: My dad met with a malpractice attorney...a really good attorney. He knew his stuff. He reviewed all of my mom's medical paperwork and concluded that there was nothing there to suggest that this was due to the surgery. He explained why, pointing out certain numbers that were in normal range and explained to my dad that when oxygen is cut off, the body will start to shut down organs that it has 2 of first, before it shuts down brain function. Her kidneys were in excellent shape and for the most part everything looked normal in her paperwork. This left us completely stumped and mystified. However, my dad had previously set up an appointment to have her assessed at UCLA medical to figure out exactly what was going on.

March 2012: Mom went to UCLA, despite her resistance. After hours of reviewing her medical history, conversing with both my dad and my mom, undergoing mental tests, and observing mom's behaviors, they were fairly certain that she had what is known as "semantic dementia". They ordered her to have an MRI, which would give a more clear picture than the CT Scan, to confirm the diagnosis. They sent my dad home with pamphlets about the disease and asked him to return for a follow up after the results were back.

April 2012: Mom had her MRI.

Also in April, I began to notice just how advanced this disease was becoming. Here's one example: while trying to schedule her (and my Aunt) a flight out to see their brother, mom was very confused about what a layover was. She was very inflexible about the times that they would fly out/arrive and was angry that it took "so long" total time to get there (counting in layover times) when Montana is only a few states away. When I mentioned something about luggage, she gave me a blank look and said, "What's luggage?" That is when I realized how serious this was becoming.

Paying bills was becoming more and more of an issue as well. It was somewhere around this time that my dad had to assume all responsiblities for paying the bills.

July 2012: Mom had her follow-up appointment with UCLA. You can read about that here. They told us that she was already in the moderately advanced stages of the disease. They will follow up with her every 6 months just to evaluate and see where she's at.

Fall 2012: By fall, dad had received a court date for a social security hearing, set for December. I discovered that there is a compassion allowance which her diagnosis falls under, which means we shouldn't have to go through all these hoops and should receive a hearing in a matter of days. Apparently the lawyer my dad hired is not familiar with these laws and we were told they would review it. We contemplated firing the attorney and doing this ourselves, but we weren't familiar enough with the process and it is such a big headache that we decided to just go with the court date set for December, which is only a few months away.

By this time, we can surely see a difference over the course of the past 6 months. Where I was taken by surprise when she couldn't recall what luggage was just 6 months ago, I would now be surprised if she DID remember what was luggage is. It is pretty well expected that if we ask her about something, she will have no comprehension of what we are talking about. For example: I asked her if she had any tape; she did not know what tape was. It is like this with anything we ask. At this point, she is barely able to follow a conversation (if at all) or answer a question that is asked of her. It's strange to think that just a year ago from now we were still debating if she really should quit her job (though deep down we knew). Today, we are debating if she should really be left alone by herself throughout the day. It seems to be progressing rapidly.

*I will continue to update this timeline about every 6 months or so (in line with her UCLA updates), or when I feel it is appropriate to update.

4 comments:

  1. I never met your mom until I moved back home in '09. I wish I could have known her before all this started, she sounds like an amazing person and I'm so sorry she's so different now.

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    1. Yeah, she was pretty awesome. I sure do miss her :(

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  2. I'm right here with you..our mother is a little farther on. Recent behaviour changes caused her to get the boot from her nursing home. They can't keep her in , she has eloped repeatedly. Numbers are fairly easy for her and she gets the code for the keypads by observation and off she goes. She has singularity of purpose and that is it. She knows about 5 people total and can't remember anyone new. Such a odd thing. We do miss who she was. Good luck

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  3. I'm shocked and sad that you had such a difficult time to get your mother's diagnosis. Since I was the person who wanted a diagnosis of my memory loss and other difficulties, my process went much more smoothly--and I am still in the earlier stages of the disease. I find it so helpful to read your blog--to me, knowing what lies ahead is comforting--while of course also scary. But I'd rather be scared than go in cold without knowing what's coming. I have microvascular dementia, so the fact that my doctors could see lesions on my MRI made my diagnosis quicker. Since I was a writer and English professor at the time of my diagnosis and have been immersed in languages all my life, I can still write (though talking is harder.) I am so grateful for that--I can talk with my family about what's going on and I think it helps them too. I, too, find moments when I hear a word and the meaning just won't come to me--I know there are hard days ahead. Thanks for lighting the path--especially necessary in this dark subject.

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