Lately I've become a sort of a bibliophile, I guess my husband is influencing me. He has a collection that could rival a small country library. Each week I pay a visit to a local thrift store to pick up a "new" book to read for .50 to a $1.00. It takes a little bit of time to puruse the piles of discarded books and find something I'm actually interested in reading: these are used books after all. Once I've made my selection & purchase I bring the "new" books home and they sit on my bedside table until I make my way down the stack.
For years I read non-fiction: self help types books (how to be a better... wife, mother, etc), for a while I was really into biographies. For the past 2 years (other than my educational FTD reading) I've been pretty dedicated to fiction. Though technically the book that inspired this blog is a memoir.
Why do I love used books? It's simple: the notes & underlined passages. Once I had a book that had been used/read at least two times previously. The first reader made notes in pencil - the follow up reader used black marker. Not only did the second reader cross out the first reader's thoughts, but made rude comments on how stupid they thought reader one was. As if reader one would ever get that copy back & know somewhere out in the universe a second reader thinks they're dumb.
Still I love the comments & underlines. It offers insight as to what someone who's gone before thinks. You are both experiencing the same thing: reading the same book; I find it fascinating to compare our reactions to the same passage. Why did the previous reader think a certain passage was so deep and insightful to merit an underline? I didn't think it was underline worthy.
What does this have to do with my daddy's FTD? There are times we're experiencing something together and I totally "get it." I know what he's talking about, why he's emoting the way he is, what's making him tick: I understand the notes in his margins. There are other times when I'm left blank. It's as if he's made notes in the margins of his life & underlined events that are of great importance to him and I'm just an outside viewer left completely confused.
I wish there was a way to know. People think you can just ask him, but many times you can't. The kicker about this disease is at times there is no logic, no sense, no reason: it just is what it is.
Sunday, May 20, 2012
Wednesday, May 9, 2012
Crying, Driving & Ice Cream
Sunday morning my daddy woke up in a bad mood. Side note: If you know my daddy he's generally a very jovial fellow. Even with this disease, most days he's in a good mood. On Sunday he woke up, got dressed (even with his shades on) and sat in his chair. Didn't turn on the Tv, eat any breakfast, he didn't even have a cup of coffee - daddy & I are serious coffee addicts.
Danger, danger - it looks like it's going to be a bad day. There had been warning signs Saturday night as my kids & I were visiting & he went to bed before we left without saying bye.
Mama had a girl's afternoon scheduled with her friend, so I had to call in reinforcements (my brother) to make sure daddy didn't get into anything - you never know what will strike his fancy, especially when he's in a "mood." In addition to the general malaise on Sunday he also accused one of the grandkids of stealing his money - he had just misplaced his money clip.
Fast Forward: Monday morning daddy did not want to go to the adult facility, though mama managed to get him there. Since he was probably still in the mood I decided to pick him up from the facility.
Once we left, I could tell he was still in a mood. Normally very social, he didn't even want to say goodbye to his favorite other attendee - he just got in the car. We ran to the grocery store, he always wants to buy the grandkids candy, but not today. Though he did perk up when he mentioned he thought we should go get an ice cream and it would be "our secret"
While eating my ice cream I had gotten some on my nose and tried to get a response out of him:
Me: Look daddy, I've got ice cream all over my nose.
Daddy: (looking straight ahead) hmmm
Me: You didn't even look
Daddy: (glancing over at me - no response)
Let's try another tactic.
Me: What's wrong?
Daddy: Nothing
Me: Do you not like going to the facility?
Daddy: Not every week (he meant every day), but I'm going to do what SHE (referencing my mom) tells me to do.
Me: Well daddy, I'm the one who said you need to go more days, not her.
I've taken on the role of mama's defender - wish I could have some awesome cape or hero costume with the role. My goal through this whole mess (the disease) is to protect daddy & guard my mama's well being.
Well the above conversation dragged on - of course I started crying, but not wanting daddy to see, kept my sunglasses on and quickly wiped away any stray tears. It's so frustrating trying to reason with someone who's lost most of their capacity to reason, due to this disease. I always describe it as a dance: he makes a move, I try to follow, if we get off course, I try to lead us back - this crazy dance changes lead partners all the time.
The good news: Daddy was in a much better mood after our ice cream drive. Who knows: was it the ice cream, the talk, or he just forgot he was upset? Really it doesn't matter. Today we have my non-grumpy daddy back, I love it and we treasure it while it lasts.
The main thing I've learned while journeying with this disease: life, time, emotions are all fleeting. We do the best we can, with what we have, while we have it. We're living life now, we can't wait til things get better or our situation changes to live our life. Life is fluid: always changing. Each moment should be treasured because we'll never get that moment back.
Danger, danger - it looks like it's going to be a bad day. There had been warning signs Saturday night as my kids & I were visiting & he went to bed before we left without saying bye.
Mama had a girl's afternoon scheduled with her friend, so I had to call in reinforcements (my brother) to make sure daddy didn't get into anything - you never know what will strike his fancy, especially when he's in a "mood." In addition to the general malaise on Sunday he also accused one of the grandkids of stealing his money - he had just misplaced his money clip.
Fast Forward: Monday morning daddy did not want to go to the adult facility, though mama managed to get him there. Since he was probably still in the mood I decided to pick him up from the facility.
Once we left, I could tell he was still in a mood. Normally very social, he didn't even want to say goodbye to his favorite other attendee - he just got in the car. We ran to the grocery store, he always wants to buy the grandkids candy, but not today. Though he did perk up when he mentioned he thought we should go get an ice cream and it would be "our secret"
While eating my ice cream I had gotten some on my nose and tried to get a response out of him:
Me: Look daddy, I've got ice cream all over my nose.
Daddy: (looking straight ahead) hmmm
Me: You didn't even look
Daddy: (glancing over at me - no response)
Let's try another tactic.
Me: What's wrong?
Daddy: Nothing
Me: Do you not like going to the facility?
Daddy: Not every week (he meant every day), but I'm going to do what SHE (referencing my mom) tells me to do.
Me: Well daddy, I'm the one who said you need to go more days, not her.
I've taken on the role of mama's defender - wish I could have some awesome cape or hero costume with the role. My goal through this whole mess (the disease) is to protect daddy & guard my mama's well being.
Well the above conversation dragged on - of course I started crying, but not wanting daddy to see, kept my sunglasses on and quickly wiped away any stray tears. It's so frustrating trying to reason with someone who's lost most of their capacity to reason, due to this disease. I always describe it as a dance: he makes a move, I try to follow, if we get off course, I try to lead us back - this crazy dance changes lead partners all the time.
The good news: Daddy was in a much better mood after our ice cream drive. Who knows: was it the ice cream, the talk, or he just forgot he was upset? Really it doesn't matter. Today we have my non-grumpy daddy back, I love it and we treasure it while it lasts.
The main thing I've learned while journeying with this disease: life, time, emotions are all fleeting. We do the best we can, with what we have, while we have it. We're living life now, we can't wait til things get better or our situation changes to live our life. Life is fluid: always changing. Each moment should be treasured because we'll never get that moment back.
Tuesday, May 1, 2012
Yard work, I hate it!
We are about to enter our second summer since daddy's diagnosis. Last summer presented a yard work challenge: Daddy wanted to do it. At the beginning of the summer things were ok - we even still allowed the kids to ride with him on the riding lawn mower. As the summer progressed (we're in the south and this year the summer pretty much extended to the end of October) we had to make some changes. By mid-summer the kids were no longer allowed to ride with their papa; at the end they weren't even allowed to be outside if he was doing working. We arrived at that decision when we noticed Daddy swinging around the bush cutter (picture a weed eater with a blade instead of string). Every week some piece of lawn equipment would break which made daddy so angry at Sears' poor repair job and boy would he slander them (Sears never repaired any of the equipment). At the time we didn't have the heart to take away this chore he loves to do, which also gives him a sense of pride. In addition to doing mine and my parent's lawn care, he appointed himself yardman for his neighbors. He'd weed eat or bush cut about half an acre back into the woods for his neighbors. These sweet people knew about his disease and figured he wasn't doing any harm. Though one older neighbor kept a keen eye on him - making sure he didn't undo all of her hard work.
By the end of summer my mama had paid who knows how much for the repairs from daddy's yardwork. Both of our lawns had bald patches where daddy would weed eat in just one spot. We looked forward to fall: when we could put away the equipment and have a much needed break. Seasons change: so here we are, the grass is high and daddy's getting ready for yard work. This year he has no business trying to use the bush cutter nor the riding lawn mower. Already he's gotten upset, thinking my husband has borrowed his tools and not returned them - "what was he raised in a barn?" The tools turned out to be in my parent's garage.
So I feel like the bad guy - I'm suggesting that daddy start going every day to the adult facility, unless someone is home with him.
This disease is crazy: in one moment I can chuckle at my daddy's determination to rid his loved one's yards of tall grass; and in the next moment I cry at his inability to do so - a task that was once so simple for him.
By the end of summer my mama had paid who knows how much for the repairs from daddy's yardwork. Both of our lawns had bald patches where daddy would weed eat in just one spot. We looked forward to fall: when we could put away the equipment and have a much needed break. Seasons change: so here we are, the grass is high and daddy's getting ready for yard work. This year he has no business trying to use the bush cutter nor the riding lawn mower. Already he's gotten upset, thinking my husband has borrowed his tools and not returned them - "what was he raised in a barn?" The tools turned out to be in my parent's garage.
So I feel like the bad guy - I'm suggesting that daddy start going every day to the adult facility, unless someone is home with him.
This disease is crazy: in one moment I can chuckle at my daddy's determination to rid his loved one's yards of tall grass; and in the next moment I cry at his inability to do so - a task that was once so simple for him.
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