Anterograde Amnesia and Why I Am Qualified to Write About It
If you have ever seen the movie "50 First Dates" you can get some idea of what my family and I deal with on a daily basis. While I have not been able to find Goldfarb's syndrome, I have found what it was originally based on- Anteriograde Amnesia. According to Memorylossonline.com "Anterograde amnesia is a selective memory deficit, resulting from brain injury, in which the individual is severely impaired in learning new information. Memories for events that occurred before the injury may be largely spared, but events that occurred since the injury may be lost."
In my case my Anteriograde Amnesia is a direct result of the brain injury sustained a medical complication during a crainiotomy to stabilize my Glioblastoma, specifically a Pilomyxoid Astrocytoma. During the surgery the doctors removed a golf ball portion of my right temporal lobe that had been taken over by the cancer. This portion of the brain is where short term memory is converted to long term memory, and now my brain does not accurately make that transition. This hub will be from the personal standpoint of someone who deals with Anterograde Amnesia on a daily basis and things that can be done to allow an individual with it to function more than the medical reasoning behind the disorder.
Blessedly I do not lose 100% of my days as Lucy did in the movie, from what we can gather it is roughly 20% of the day that does not get converted accurately. Notice I say accurately, one of the other phenomenons of this disorder is that my mind knows what I "should" have done and often simply inserts that into my "memory." This wonderful complication is called confabulation and anyone suffering from Amnesia has it as well. In my case, I am highly tracked and regulated allowing me to have fairly mundane confabulations. My logic remains in tact and I can sometimes find the "false memory" on my own, but most often I simply must trust those around me. People who suffer with Anteriograde Amnesia must have belief that those around them will not lie to them ever. Once we can comprehend that we are not accurately creating memories, we must find ways to function on the premise that every memory is false. And this is where things get tricky.
Do you know anyone who has Anterograde Amnesia?
My Experience with Anterograde Amnesia
Understanding and accepting what is happening are two very different things and one of the things you will see throughout my posts is if you are dealing with any of the topics I write about the first and foremost thing you need to do is get the individual in counseling. If possible all family members can benefit from this. Back to the topic at hand. The key factor to keep in mind is that for the individual suffering from the amnesia or confabulation their memory or recall of the event maybe completely false, but it is completely true in their mind. Sometimes this maybe as simple as not taking a bath when they believe they did, or doing the dishes. Point being they are not lying to you. Caregivers and support individuals are the only ones who can accurately determine if this is the case.
For us this is definitely harder on my husband than on me. He must constantly deal with the fact that I am not physically capable of telling him accurately what happened at any given moment, and the more upset I am, the worse the confabulation becomes. Our daughter was so young when this began that she knows nothing different from me so she does not have the sense of loss that he does. We are completely honest with her about what is happening to me though in hopes that she will not use my disabilities against me as she gets older. She knows that when it happens it is not because I don't love her, or that I don't care but that my mind just does not create the memory. Her term for it is:
- Mom's brain is like an automatic flushing toilet. Sometimes you can be sitting on it and not done with what you are doing and it just flushes anyway. It is a little shocking, but you finish up what you are doing and go on.
While I cannot be trusted for any major tasks that require completion without supervision such as paying bills, performing a task, or working, I can find usefulness within my family in highly regulated situations. By this I mean my caregivers have structured my life in a way that I am able to participate in daily living, taking our daughter to school, prepping dinner (not cooking), picking our daughter up, doing laundry, etc; however, I have zero major responsibilities, every task I have is monitored and when I do not end up where I should be saftey measures are in place to find out where I went.
The major question I am often asked is in regards to our daughter and how I can be "trusted" with her. This situation presents most predominantly when I go to bed at night. The memory does not convert. My days are regulated using Google calendar which is color coded and synced to my alarms. I am never responsible for picking her up from a location that she could be left alone at any time. Family, friends, and her school have been notified of my situation and she is old enough to know both my husband's and my phone numbers as well as my condition. She can reach out if my disorder gets in the way.
Above I mentioned Google Calendars. This is a life saver for anyone suffering from a memory disorder. It is able to be accessed from any location that has access to the internet, sync across multiple devices, accessed by multiple individuals, and updated by anyone across the platforms. I no longer "remember" my day or what I have planned. I do what is in my calendar. From getting up, taking her to school, brushing my teeth, working out, you name it. Nothing is done without checking the calendar and I trust it much more than I do myself.
Suffering a brain injury is incredibly difficult, and what I wish more than anything else is that I fully understood what was being done to my brain when I had the surgery to stabilize the tumor. Let me be clear, there was absolutely no other option, the tumor type does not respond well to chemo or radiation, and it was too large when it was diagnosed. It was very slow growing but by the time we found it, it was the size of a golf ball. Still, we thought that when the surgery happened they were removing the tumor, that that a Glioblastoma multiform Pylomoxoid Astrocytoma actually takes over brain cells. It is what is called a primary tumor. This distinction is what prevented me from getting care for a long time. I did not realize the extent of damage or amount of negative space that was left upon the removal of the tumor.
Still, even with the multitude of disorders I now have, I feel like I am a productive member of our household which gives me a sense of purpose and drive that I am blessed to have. I hope that others can learn from our mistakes and use some of the tips and tools we have learned in order to help themselves, family or friends if they are suffering from similar issues. Brain tumors are becoming an epidemic and most of us don't like talking about it. I have gotten to a point where I can so please don't hesitate to ask if I am unclear or if you have another question about dealing with brain tumors, or the repercussions of brain surgery or a traumatic brain injury.