One night, when I was pregnant with my first child, I made the mistake of watching "The Notebook" for the very first time. The movie starts with the romantic story of young love and evolves into a heartwrenching tale of that same young girl who had developed dementia and forgotten her husband. He reads to her from a notebook every night, in hopes that he will spark her memory of the powerful love they once shared. I'm not generally a crier in movies. But as I saw the scenes play out, with his determination to "bring her back", it broke my heart. I bawled my eyes out that night. There were three things I concluded from watching that movie: 1-never watch a tearjerker when you're pregnant 2-when it's my time to go, it will be in my sleep with my husband's arms wrapped around me, the two of us leaving this earth together and 3-dementia is one of the most devastating diseases known to man. That movie haunted me for the better part of the weekend. I couldn't shake off the feeling of sadness. Imagine living in a world where you can't remember anyone, least of all the people who you loved and have loved you best. Imagine having your loved one not remember who you are. What a painful situation.
My mind now wanders back to "The Notebook". Is that what the end will look like for my mom? Will there come a point in time where my mom will no longer remember who I am? Will there come a point where she will no longer remember my dad, who has been her sweetheart since childhood? The thought of it stabs me in the heart. I don't know all of the answers. There are many unknowns and I've compiled my list of questions for the next trip to UCLA. In the meantime, I've done my research in hopes of finding some answers to these difficult questions. I'm afraid the answers haven't brought me any comfort. I've spent the past three days on the verge of tears. I am finding it difficult to concentrate on much else. My mind keeps returning to the studies I've read on the disease. My heart aches as I picture the road that lies ahead. This is what I've learned about Semantic Dementia.
First, Semantic Dementia is very rare. It is a genetic defect that usually comes "out of the blue", with no family history of the illness. Although it can be hereditary, it is a small percentage of the Semantic Dementia "population" where this is the case. This is probably the best news I have read on the illness. I would be lying if I said that the fear hasn't crossed my mind that I will someday inherit dementia. The age of onset is usually between the ages of 50-65, give or take a few years. My mom will be 51 in May; she was 46 when she likely began exhibiting these symptoms.
Sematic Dementia is in the frontotemporal lobe dementia category, which makes sense why we at first thought it was temporal lobe damage from her surgery (many of the symptoms are the same). There are four major symptoms to look for in Semantic Dementia:
1. Language-sufferers will have a hard time remembering what certain objects are called. They will use words incorrectly. They have a hard time processing things that are said to them and difficulty in processing what words mean.
2. Recognition of Faces and Objects-they have difficulty recognizing people whom they do not see regularly. They can also have difficulty recognizing certain objects (such as a carrot in the grocery store).
3. Memory-there is problem in memory, but only a certain type of memory, which is called Semantic memory. Semantic memory tells you who faces represent, what objects signify, what words mean. While there is a disconnect in this area of memory, other memories are well preserved, such a how to drive to familiar places, or recalling certain events from the past.
4. Personality and Behavior- sufferers become inflexible and self-centered. They have no awareness of the feelings of others. They may become preoccupied with only a few activities and adopt a fixed daily routine (they have to do certain things at certain times).
The sufferer is not able to control any of these behaviors or difficulties. They are usually aware of some of the difficulties; my mom knows that she has a problem remembering who people are. It is embarassing for her. But she does not understand the extent of her disabilities, as is the case with all sufferers of Semantic Dementia.
I stumbled onto a site which broke down the stages of Semantic Dementia.
First comes the mild stage. Memory of day-to-day events are usually spared. This stage starts with the language problems. Words that aren't commonly used are replaced by words such as "thing". My mom has adopted some new favorite words. She uses the word "too" at the end of nearly every sentence. She says "thing" for objects or words that she can't remember. Other favorite words, which will come up in any given conversation, include "blessing", "severe", "correctly" or "incorrectly", "supportive", "delicious". She'll use phrases like "which is good" repetitively.
After a few years comes the moderate stage. This is when they have trouble understanding what others are saying. There is increasing difficulty in recognizing faces and names of people, even friends and family. They develop behavioral problems similar to those who suffer frontotemporal lobe damage (ftd). Mom has much difficulty in these areas, as I have already mentioned. If she does not see a person on a regular basis, she will not remember who they are. It doesn't matter if that person was her maid of honor and best friend for 15 years. It doesn't matter if they nieces or nephews that have been away for a while, or my best friend who was like a daughter to her. If she doesn't see them regularly, she cannot place them.
After 4-5 years is the severe stage. This is where the disease becomes more advanced. Their behavior becomes worse. Some behaviors include apathy, compulsions, altered food preference, impaired facial recognition and weight gain. They tend to show interest in games with symbols and words. When I read about the "severe" stage, my heart sank into my stomach. This is my mom in a nutshell. Aside from the memory/recognition problems, and her behavior problems, she has gained weight (which she constantly complains about) and has developed an altered food preference. She loves hamburgers, milkshakes, tortellini and frozen mixed vegetables. Those are her staple foods. She is a picky eater-worse than my three year old. If we fix something she doesn't like, she brings her "delicioius" tortellini. She has compulsive behaviors; she will not step a toe onto the porch without her make-up on. She is obsessed with her time schedule. She has to take her medication on the dot...8:30 am, 2:30 pm, 8:30 pm. Not a minute before, not a minute after. Lunch is at noon, dinner is at 5:30 and bedtime is 9:00. My mom spends her days playing card games on the computer and doing word puzzles on the couch.
It is alarming, but it seems as though she fits under the severe category.
What is the prognosis?
People diagnosed with Semantic Dementia are usually given between 6-8 years to live.