After months of scouring the net, I predicted that my Mom had Pick's Disease. All the symptoms seemed to fit -except she didn't have any bizarre and disturbing behaviors that were socially inappropriate. What I did notice, was that she was becoming more and more withdrawn, finding it much harder to speak, and she almost never called me to talk. I had to initiate all of our communication. It was also hard to get her the help she needed because she was living an hour away with her second husband who was barely able to care for himself, let alone her.
Once we were finally able to see a neurologist and Mom had an MRI and a neuropsych profile performed (for a second time in two years) my fears were confirmed. She was diagnosed with Frontal Temporal Dementia --an umbrella term that can encompass a whole host of disturbing behaviors depending on which parts of the brain are deteriorating.
Throughout this whole process I've wanted to be able to "pin down" and label my mother's illness with a name. I began calling her disease "Pick's Disease" for a while, then I started calling it PPA, or Primary Progressive Aphasia. Now I really don't know what to call it. I'm learning that the sad truth about FTD is that you never know from week to week what part of your loved one's brain will be affected next. You might be "lucky" and only have their ability to communicate be affected...or you might also have to deal with loss of motor control, and/or odd socially unacceptable behaviors.
At this point, my mom is still interested in life, enjoys a variety of crafts, likes being around people, and still possesses the ability to empathize and love. Her troubles lie in the areas of communication, logically solving everyday issues, and math. She just hates math!! This is surprising considering she used to be a AutoCAD drafter who figured out complex angles each day of her life as she drew pipes for fabrication.
Prior to the above diagnosis, mom was laid off of her job and fired from a few more. She eventually secured stable employment cleaning rooms at a mental hospital. She once confessed to me that is was hard seeing the person she might become one day. Of course I did my fair share of crying after hearing her say that. I try my best not to cry in front of her though.
Mom has already lost my father to suicide in 1990, and she was sadly destined to lose her second husband to the same tragedy in 2006. I was awakened by my husband in the middle of the night telling me what had happened. I dressed and drove to my mother's house quickly. We stayed that night alone sleeping next to one another on her couch. Mom had taken some of her late husband's Xanax to block out the pain. In the next few days I learned that Walter was not only an alcoholic, but also addicted to a whole host of other drugs as well. My mother knew it...but she refused to leave him anyway. I could barely comprehend the fact that this woman had made the decisions she did without reaching out to me for help. This simply wasn't the mother I had always known.
The next four months were sheer hell. Mother and her late husband's finances were in complete disarray. Her house was a wreck. There were all sorts of items he had bought or found and intended to sell at a garage sale. Mixed in with that, one would find bird seed, car parts, a plastic bucket filled with some sort of molded food product. I cannot describe to you how very bad it was. With about eight people helping, we were only 1/4 of the way through cleaning up the house at the end of one week - if that gives you any idea.
I am happy to report, that here I sit nine month's later with most of these issues resolved. Mom and her two little dogs live with my husband now. All of her bills are paid off, her house was sold, and her other pets were given to good homes. She is now receiving the care she needed and seems much improved. She plays mind stimulating games on the computer, walks her dogs, takes clay lessons with me, participates in a range of activities at the Senior Center, and interacts with people on a daily basis.
Well, that is our story...but I intend for this website to grow into a place you can visit for information and suggestions related to the FTD-related issues with which you may be dealing. I found that there were very few resources out there and wanted to create another place for people to go. Let me know what you think.
