Our journey to an FTD diagnosis lasted almost five years. For most of that time I was actively searching for what had happened to my husband, Keith. Over those five years he had become angry, suddenly forgetful, and occasionally confused about things he never would have been before. He was a different person than the man I married.
I scoured the internet for any information I could find. Keith had been an alcoholic so I thought maybe he had damaged his brain. But that didn’t fit either. He was sober now, and the brain should start to heal. Instead, as time went on, he got worse.
One day I found something called Frontaltemporal Dementia (FTD), and started reading. I felt like someone had been hiding in our house and taking notes. Everything matched up. The symptoms they were describing sounded like what our lives had become the last several years. I felt like I was finally getting somewhere. Even if it wasn’t FTD, at least I knew that others were experiencing the same things. I wasn’t alone.
Unfortunately, a lot of doctors don’t know much about FTD, and don’t know what to look for. The Alzheimer Association has done a wonderful job raising awareness about Alzheimer’s Disease, but most people don’t realize that AD is only one form of dementia. They think that dementia only has to do with memory and don’t realize that it can also mean apathy, anger, loss of reasoning, behavior and personality changes, and so much more. So, when we went to the doctor and I told them something was wrong, they would ask Keith things like, “Who’s the president?” , “What year is it?”, and – my favorite – “Spell ‘world’ backward.” It was insulting. We were told he had depression, that we had relationship problems, that we needed marriage counseling.
Finally, after a lot of frustration, tears, demands, and, finally, threats, we saw some new doctors, had more tests, and in January of 2019, Keith was officially diagnosed with FTD. In some ways, this made things easier – for me, anyway. I finally had a name to put to his condition. I felt validated. It wasn’t just me, I wasn’t just imagining it, there really was something very wrong. But for Keith, the nightmare was just beginning.
One of the most common symptoms of FTD is a lack of awareness. Anosognosia, it’s called. In Keith’s mind, he was fine – no different than he had ever been. He couldn’t see any of his strange behaviors, saw nothing wrong with his angry outbursts, and didn’t know how his actions affected those around him, even our children. All of a sudden he was being told he had a rare dementia with no treatment and an average 7 year life expectancy, was recommended that he cut back on his work hours to reduce stress, file for disability, and – the lowest blow – told not to drive. In one fell swoop, everything he knew as his life was taken away. I could see the errors in judgement, had watched him make some serious driving mistakes, had read the test results and knew what they were all pointing to, but for him, it was all for nothing. His life was being destroyed – for nothing.
Keith is being managed by a good team now. He is on medications to stabilize his moods, which seem to work for a while before requiring periodic increases. There are good days . . . and some not so good days. He’s had a slow progression and will likely continue that way. At age 61, he could live for many years yet, or he could suddenly decline. One of the hardest things about FTD is that there is no set pattern, no road map. Every patient is different and their progression is as unique as the individual. The one thing I can say with certainty is that, as we have gone on, nothing is the way I thought it would be. When I first read about FTD, my brain created scenarios. I thought through all the possible outcomes I could think of – what symptoms would develop next, what the progression would look like, how I would react to things – and in almost every case, things went in a completely different direction than what I had imagined. In writing here, I am hoping to share our story, to let you peek into our lives and see what dementia is – not just what you read in pamphlets or on websites – but what it really is – the day to day, the in and out, the good, the bad, and the ugly.
I’m going to be honest and say straight up that I don’t know if I’m going to be any good at keeping up with blog posts. Who knows? This might be the only one I ever write! Ha! But, if I can help bring awareness about FTD and help other families with their journey, I want to try. So, till next time . . . This is Dementia.