Journal Day Five

Sorry to my kids for yelling so much today. Their behavior toward each other really bothers me, especially the two older kids. I have to consider that my emotions over my dad affect the way I interact with them and the way they treat each other. My mother told me today that she felt that my dad is "sliding backwards" again. The incident that prompted her was that my dad came back from one of his rental houses that was having problems with their heat and he couldn't figure it out. She said he came back home and told her that he felt that he couldn't understand/figure out things that he knew before. This is the first time he has recognized his diminished capacity. She said he was really sad. I fell apart after our conversation. I felt so sad for him. My dad has three houses that he pretty much built himself. You know the expression "jack of all trades, master of none"? My dad was master of all. With less than a high school education, he was the smartest, most capable man I knew. I know. He has accomplished so much in his life, it's an unbeleievable story. For another time. Take good care, S

Journal Day Four

I know it has been a long while since I've written. Let me catch you up. The Giants won the Superbowl. Everyone is so excited. For the game we were invited to a neighbor's house but I didn't want my parents to be by themselves so we had them over our house and watched the game together. My father seemed to have fun. Less animated and involved than he used to be but still not too bad. I was really impressed with my daughter. She is eight and spend the entire evening sitting by her grandfather, taking care of him, bringing him food and drink. He really got a kick out of that! I think she had a great time as well. I did notice that my dad who used to be a clean freak, meticulous over things like eating only in the kitchen, etc... ate on our living room sofa and wasn't concerned at all over getting food and crumbs everywhere. I let it go and just enjoyed my time with the family. In general, one of the changes with my dad has been over cleanliness. First, personal heigene has gone down the tubes. My mom has been complaining about this for a while but I just noticed recently. Second, messiness around the house. Like I said before, this man was a clean freak. Obsessed with a clean and organized house. Now it seems like he just doesn't notice or pay attention/care about making a mess. He also doesn't clean up and my mom is constantly walking after him, cleaning up. Today I took the kids out of school early (irresponsible parenting or coolest mom ever?) to take them to the Giants rally in their NJ stadium. We met my husband at my parents house and went from there. I was hoping to convince my dad to come with us but he didn't want to. He was sleeping/resting in the family room when we got there. Did not come out to greet us. Unusual. When I went in to speak to him he was out of it. My husband said he couldn't engage him either. My dad has been sleeping/resting a lot in the afternoons. I'm not sure why. We saw him again in the evening and although he was awake and hanging out with my mom in the kitchen he did not ask us anything about the rally at all. I think he's getting worse. Again I am so upset. Feel hopeless. I'm home now with the kids and can't focus on anything else. I'm trying so hard to put my dad's condition in perspective. To prepare myself for the fact that it's going to get worse. That I have to continue to live my life, be there for my children... But it's so hard. I feel like I'm drowning. Last weekend was my birthday, 44 years on planet earth. My husband planned a day in a spa/sauna for the entire immediate and extended family. My dad made such touching toasts to me, to our entire family. It was so nice. He was jovial, singing, laughing. A glimmer of who he used to be. For a moment I convince myself that he's not getting worse. In fact, maybe the disease has halted. A miracle. But the very next day, sometimes the very next moment I realize that no, in fact he is sick and getting sicker every day. I don't know the future. I don't know how I will handle it. How will my kids be affected? How will my mom handle it? I know the biggest burden is on her. Well, at the end of this week my parents are going to Aruba with my in laws. I know, strange in the best of circumstances but with my dad's condition, I don't know how they will get along. They are going to be living together in a two bedroom condo. Fingers crossed. My dad's personality has changed. He is stubborn (more than usual), easily irritated (especially by my mom), and overly concerned about money. My mom tries to run interference for him, often interrupting him, answering for him, making decisions. I know her intentions are good but I think my dad resents her. He often says, "well, if mom wants to talk, let her. I'll just be quiet". And then he shuts down and doesn't speak until she stops talking, leaves the room, whatever... and he is spoken to directly and allowed the time to focus and formulate what he wants to say. You see, we are a loud, overbearing, opinionated Russian family. Before FTD, my father was the head honcho, the leader of the pack. The loudest, most argumentative one of all. Now he can't keep up with a conversation that has a lot of people involved with everyone talking at once. He needs quiet; more time to think of what he wants to say, find the right words. I think that's why he's better at talking one on one and quieter when he's in a group. I think that's enough for today. I realize I need to come back more often and write. Life around me is tough, unbearable at times but for the moment, after writing this I feel better. Take good care, S

Journal Day Three

Very grateful today. My Mom's MRI was normal. Such a relief. Can't even bring myself to think about both my parents being sick. I didn't see or speak to my dad today. Tomorrow my oldest son turns 11. He's also testing for his black belt in Tae Kwon Do. I hope my dad comes to see him. I remember when my son was born, my dad was just over the moon. Over the years my dad has been so close to the kids. So many wonderful memories. I hope so desperately that they remember my dad, their grandfather at his best, remember the great times they shared together. But a part of me is scared that they are so young that they will not remember those days but just remember how he is now and how he will deteriorate in the future. That makes me so sad. So sad. Before I continue down pity ally, I will say good night and resolve to enjoy tomorrow, so proud of my son. Encourage my dad to attend the black belt test and create the best memories possible for my kids and myself to hold on to. Take good care, S

Journal Day Two January 19, 2012

Rough morning today. Woke up really early. Couldn't sleep. Thinking of my dad and the conversation I had with his doctor yesterday. I spend the morning online doing research. Reading other blogs that chronicle family journeys with their loved ones who have FTD. The future is so scary. I read that people with FTD become incontinent, develop compulsions, refuse to shower, neglect heigene, lose speech and so on. We haven't seen any of that with my dad yet. We have seen speech loss and apathy, confusion with words and names, some memory loss. I'm grateful but so anxious over the future. A small part of me also questions the diagnosis. What if the doctor is wrong? Maybe my dad has a different kind of dementia or something else. My dad is extremely wary of doctors. It's a struggle to get him to go for visits. I want to take him for a second opinion but he won't go so for now we are stuck with our current doc (who, by the way, is highly respected and well regarded in our area). But I feel he just doesn't give a crap. It seems as though he's given up.... Your dad will eventually become an alien to you, deal with it. What? How?..cried for a bit. Seems pretty much daily occurrence for me lately. Spoke to my mom. She said that she felt he was about the same. Did say that at the doctor's visit he didn't know what year it was and was only able to name five out of six grandchildren. I wanted to take the kids for a visit after school. He is so happy, lights up when he sees them but N and S were a bit congested when I picked them up so we decided not to go. It's A's birthday on Saturday. My heart is not into any sort of big celebration so on Sunday both sets of grandparents will come over for lunch. I'll see how my dad interacts with the rest of the family. He used to be the life of the party. Singing, joking, dancing. Not so much anymore. I feel such a loss. My heart breaks when I look at him. I have to keep the tears in. His eyes still have a twinkle. I know the real him is in there. He's quieter. Doesn't really start conversations but does talk when engaged. We'll see how it goes. Hope for the best. Oh, and my mom has been having headaches and pain in her eye. Scary because several years ago she suffered from a subdural hematoma and had brain surgery. Tomorrow she goes for MRI. Fingers crossed. Take good care, S

Journal Day One

This is harder than I thought. Why a blog? Why now? My father was diagnosed with frontal temporal dementia several months ago. I was the one who noticed a change in his behavior and finally convinced my mom to convince him to see a neurologist. The diagnosis and conversation with the doctor was devastating. Heartbreaking. The past few months have been tough. Anger, tears, acceptance. No, not really. Not acceptance but an adjustment to his new state of mind and trying to make the best, the most of every interaction. Trying to spend as much time as possible together, creating memories. It was working. My mind was calmer. Today my dad had a follow up appointment with the neurologist. I spoke to the doctor afterwards. He said he noticed a marked decline in my dad's condition. He did much worse on his mental assessment, was not oriented to his surroundings, not aware of what was going on around him. It has only been three months since the last appointment. The doctor said he was surprised at such a rapid decline. I had so many questions, worries. I was so upset. Doctor was so cold. I asked if my dad was on the right medications. Doctor said yes. What I really wanted to ask was is my dad going to become a vegetable and die? How long do we have? Will he remember who I am or his grandchildren? Why is this happening to him and to our family??? Our conversation ended with the doctor stating that in the next year we could expect my dad's forgetfulness and confusion to get worse until he no longer remembers anything and is unable to care for himself. I did try to get a timeframe but the doctor wouldn't commit to one. Only said that for some it's a year or two and others longer. Our conversation ended. I have three kids and they were downstairs waiting for me to check homework. I couldn't make it out of the bathroom, where I took the phone call (just about only place for privacy). My husband took over and I stayed in bed for the rest of the evening. That's the reason for my blog. Since my dad was diagnosed with FTD, I have been so upset, so devastated that I haven't been the best mom. My kids don't know why. I want them to maintain as normal a relationship with their grandfather as possible so I haven't told them the whole truth. When they are old enough, this journal will explain, will give them some insight. I love my dad. I love my kids. It's so hard to deal with what's happening to my dad and be the kind of mom I know my kids deserve. I hope that by coming here and expressing my emotions, frustrations, fears, anger that I will be able to focus and enjoy my kids instead of taking my emotions out on them. I see this blog as my journal. I will not be going back with my entries to spellcheck or pretty anything up. It's going to be real and raw. I hope it helps me deal and if anyone else out there is in the same situations as me, I hope this blog helps them as well, if only to know that they are not alone. Take good care, S