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