I've told you all how wonderful my husband is...the kind of father he is...a man whose character has been shaped by his Savior. I'm so proud to call him mine, the father of my children, the leader of this crazy family. But this post isn't about him. It's a painful one to write...but my heart needs to share. It's about my father, the man who helped bring 6 God fearing, Jesus loving children into this world. A man who is crazy about his Jesus and his family. A man who will do whatever he can to serve others. A man who loves, provides for, and protects the family God has given him. This is the man who raised me...and he's still there...sometimes.
You've probably never heard of frontotemporal lobe dementia (also called FTD or Picks disease). We hadn't either...until my father was diagnosed. He's 57. It's a form of dementia that strikes it's victims young and it strikes hard. It's fairly rare but research surrounding the disease is taking off. It's NOT alzheimer's and it's not really like any other form of dementia...it's almost weird that they share vocabulary. It's a disease that destroys the part of the brain responsible for inhibition, reasoning, rationalizing, social skills, and much more. Basically it destroys the character. It's victims eventually lose all resemblance of who they once were. And if I'm being honest, the real victims are the family...the wife who takes care of a man who is in no way her husband and says words that break her heart over again every single day, the children responsible for babysitting an unpredictable mean man who was once their loving father, all of the loved ones who take the verbal abuse that we know is not actually coming from him. It's hard. It's ugly...a painful kind of ugly. If you have the time and care to educate yourself,
http://www.helpguide.org/elder/picks_disease.htm is a great link that describes the disease and it's signs and symptoms. I wish so badly that anyone in our family had known about this disease. Our father has had it for years undiagnosed, then misdiagnosed. So much pain could have been avoided had we only known what to look for. The disease is bizarre as are it's symptoms. Close to 10 years ago, he started drinking 3 gallons of water each day. He would carry around a gallon milk jug filled with water and try to convince others to do the same...we just laughed at him and chose not to heed his advice. And back then, he would laugh with us. If we had only known. Between 5 and 10 years ago, he began neglecting issues of personal hygiene...we tried to address the issue in a sensitive manner but nothing seemed to matter. If we had only known. There were SO many things like this...and not one connected to another. Honestly, he's always been somewhat of a corky guy and we all wrote the oddness off.
In the spring of 2011, the symptoms heightened and finally revealed to us that something was definitely wrong with my father. After seeking help, he was given a diagnosis of anxiety and depression...a common misdiagnosis of FTD. The appointments continued and by early fall, we got the news. He and my mother sat in an office, they were 1st told that he had FTD and what that means, that his days were growing short, and then to go straight to his private practice and close the doors inevitably. My dad is a physician. A man passionate about health, medicine, and his career. There is NO way a person afflicted was FTD can practice as a physician...or work period. But the position of a medical doctor is a dangerous place for FTD to live. My mom called me on that long drive home, I remember it well. We cried together. I was in shock. No one thought he had a brain disease, it wasn't on our radar, nothing about his behaviors fit the mold of what we knew as "brain disease". And that's exactly what FTD is. I mourned for my family, for my father, my mother, what they were going through. My own pain was huge but I couldn't even comprehend how they must be feeling. And it broke my heart.
My parents were here yesterday for Father's Day. It was a good day and I was blessed to get to spend it with him. At this point he still has some good days and we're thankful for those. Some days he seems like the dad I know so well. And yesterday was one of those, at least part of the day. When he's stuck in his bad place, we have to deal with him carefully, we have to stay calm, avoid the innate urge to contradict him and tell him what we're really thinking. That's hard. But reminding myself that it isn't him talking...it isn't his good brain, it's the diseased brain. This helps me and the rest of my family cope. It's a horrible thing to watch a man, a husband and father, a rock, a perfect picture of health, a man full of integrity, pride, and brilliance...lose so much. And I've only shared what I'm comfortable with...what I've written today is a small...small...small picture of the pain and suffering our family has endured. For the most part, we've only spoken to family and our closest friends about our father...we've all been trying so hard to cope and to heal. But I needed to share, I got my mother's blessing, and I need to ask for prayer. Pray for love and grace and mercy and healing. Pray for my dad and pray for my mom even harder. I know my God is good but all of this has been a reminder for me that we deserve nothing good. Anything good is a beautiful blessing from our Savior. I don't deserve my happy life, my husband, my healthy children, my home. They are all undeserved gifts. I don't want to go into what I do deserve. Our God is good and He's holding us all through this horrible chapter and I know He'll somehow use it for His glory. Although in the here and now, the valleys seem to only get deeper. Please pray for our family.
Believing and for His glory,
Samantha
