A token of his affection (or my favorite Christmas present)

After Daddy was diagnosed with FTD I thought it would be important for everyone to have a tangible token to associate with his memory.  Most likely Daddy won't be there for when my kids graduate high school or college, get married, have kids of their own or any of the other major milestones in life.  I thought it would be nice for everyone to be able to hold or wear something at times we really want to know that Daddy or Papa (as the case may be) would have been here at this event and he loves us so much. 

So last year we started by getting all of the granddaughters a heart pendant with their name on one side and "Love, Papa 2011" on the other.  It's simple and appropriate enough for the girls to wear now, after he's gone or they can use it as a charm, tie it into their wedding bouquet, whatever they want.  It's something to hold close and to trigger Papa memories. 

Before last Easter, Daddy and I started a project for Mama.  Now Daddy has never worn jewelry and though he has a wedding band, I don't think he's worn it more than on a few occasions.  We were going to make something with his wedding band, but we couldn't find the thing.  So we went to our friendly, local jewelry store where Daddy and I began the project.  We picked out a gold wedding band and took my Mama's original engagement ring (she doesn't wear that - she wears her Grandmother's). The jewelry store removed the diamonds from the engagement band and set them on three white gold bars inside the gold wedding ring - to make a beautiful, unique pendant.  I wanted Daddy to give this to Mama instead of us having it made after he's gone.  When he's no longer here she can wear it and know Daddy gave it to her and had a part in the process.  With this disease, Daddy's ability to fully participate in decisions, even simple ones like ordering a meal, is very limited.  When we gave Mama her necklace at Easter, we had put it in an egg and she was pretty surprised and Daddy was pretty proud. 

This Christmas, my boy (who's all of 7) is receiving a pocket watch Daddy picked out.  On the front it has his initials and the back says "Love, Papa 2012."  He won't really be able to use it until he's older and even then maybe on special occasions.  Still I wanted him to be able to have a token of Papa at his special life events or if there's just a day he wants to feel closer to Papa after he's gone.

Now as for me, I've known since the beginning I wanted something to have that I could touch when I think of my Daddy.  But what?  The story of how I received my token is just perfect and I'm so thankful it worked out this way. 

One day during the last week of November, I was over at Daddy's house watching him.  He was having a lunch date with an old friend and instead of going to the Adult facility for a half day, I was sitting with him.  Daddy is often very sweet and loving, but on this day even more so,  he kept on calling me his baby girl.  When his friend was there, he would point over to me and say, "that's my baby girl - she's a good girl."
  
Since Christmas was approaching, I had asked him what he wanted to get mama, since we would have to go shopping together.  Then he said, "What am I going to get you?"   Well I don't know, so I said, "I don't need anything."  He responded, "Yes, I have to get you something."  So there I go starting to cry in the kitchen because he still wants to take care of me.
Later in the afternoon we stopped by our jewelry store: Artisan Jewelry   I was looking for a nice pair of earrings for Mama from Daddy.  This is the same store we had gotten both the girl's pendants & Mama's necklace - so they're pretty familiar with our story.  I was telling the lady how I want something special from Daddy, but I just don't know what.  We were looking through the cases and she told me I would know it when I see it.  My style is different - I like to have things that are unique and a little antique looking, which I had just mentioned to her.  She brought out some pieces from the back that they were working on - repurposing antique pieces - most of them from a two generation hat pin collection with some pins dating back to the mid-1800's.  I saw something I just loved, but this is a gift from my Daddy and I want him as involved in the process.  So we laid out three pieces for him to choose from - and he picked the one I thought was so lovely.  We had found my token.  The next day when Daddy had gone to the Adult facility, he was so proud and telling everyone that he had gotten me a Christmas present.  The store finished my piece very quickly and though it is actually my Chrismas present for this year, I've been wearing it everyday since November 30th.  Most days Daddy looks to see if I'm wearing my necklace - and I am.  If I know I'm going to see Daddy, I even put it on with my pajamas so I can show him I'm wearing our necklace. 

Mama, as well as most people who know me, has been calling me a spoiled brat for getting my Christmas present so early.  That's ok - I'll take it.  That experience and my necklace have truly made me feel like Daddy's little girl more than anything else in over 2 years.  I'm so thankful for the memory of the day we went to pick out my present and how much he wanted to tell me I'm his baby girl and that I'm a good girl.  Those words are the most priceless token of his affection and I will treasure them forever.  No matter what the future holds for us, even after he's no longer with us, I know that to my Daddy, I am his good, little girl.

The Kids are Alright?

Daddy is a father of two and grandfather of five. Lately the sense of loss in relation to Daddy/Papa's progression has been quite acute. As a mom, I'm supposed to have the answers and offer comfort. That's difficult when I'm struggling just as much as my kids.

Over the last few weeks, my girls especially have struggled.  We’ve shared several tear-filled conversations: Why did Papa have to get this disease?  Why won’t God fix Papa? Why aren’t Doctors only working for a cure for FTD? Will Papa forget us?  If Papa forgets Jesus will he still go to heaven? Why? Why? Why?

In life when we struggle with anything – we usually find ourselves wrestling with the often unanswerable "Why?" When I can’t answer that question for myself, how am I possibly going to answer that for my elementary-aged children?

My tactic: I cry right along with them. 

I don’t know why my Daddy got this disease, nor at present do the doctors.  As for God healing my dad, it could happen, but I’m a realist and I don’t want to cling onto something that might not happen in this lifetime.  Nor do I want my children to relate to God as if He’s a genie if Daddy is healed or that God is a monster if Daddy isn’t fixed.  My oldest often proposed that doctors stop working on cures for other diseases across the globe and only focus on FTD.  To that proposal I try to explain that people whose loved ones suffer from any disease are just as sad and upset as we are with Papa’s FTD.  No one wants to lose their loved ones, to see them suffer, drift away and ultimately die.  Death is loss and separation and we want our loved ones whole and near.

Every parent has their own parenting style.  Mine includes being pretty frank and honest with my kids.  When dumping a mountain of reality on them, of course I take into consideration their age, maturity level and individual personality.  How I tell one child something will have a different approach from how I tell another.  The girls understand Daddy’s disease a lot more than our youngest does.  There is no way to sugarcoat the fact that Daddy will probably forget us or, at best, not be able to speak. Faced between these two, not speaking is what I’m hoping for.  Even as an adult there is so much fear in that fact – how much more so as a child.  It’s hard to distinguish that if he forgets us it’s not by choice, or that we matter little to him; FTD is a horrible disease and it robs the sufferer of their dignity, humanity and ultimately life.  So yes, though Papa may forget us, it has no bearing on how much he loves us. 

As to the deeper theological questions, I’m fortunate to have an in-house theology nerd.  My husband has spent his life & education studying theology, philosophy and the Bible.  I answer what I can then as an easy out say, “you need to ask your dad.”   The other day, my oldest and I were lying in bed: talking and crying about Daddy/Papa.  I mentioned God and she says, “Please don’t talk about Him; I’m very angry with God.”  I’ve been there.  I encourage her questioning her relationship with God.  She needs to develop her own faith.  For most of us our faith grows strongest during hard times.  If we believe that God knows our innermost parts, then doesn’t it make sense to shout out or hurt, pain, anger, frustration, etc.?  Like Shrek says, “Better out than in.” 

Watching Daddy/Papa progress is very difficult.  We’re two years into the diagnosis of a disease where the life expectancy is on average 7 years after diagnosis.  He changes all the time, one week struggling to do what he easily did the week before.  It’s very hard for children because we have to walk this fine line of spending quality time with him, watching to see if he becomes agitated.  It’s a heavy burden for an adult, much less a child to pay close attention to him in any situation.  In this journey we’re on – it’s easy to see the sad, difficult aspects of our life.  My aim is to have these kids enjoy and love their Papa as much as they can and receive what he can give until he’s gone. 

The other day, Mama and Daddy drove up to drop something off at our house.  My kids ran out to see them and say hello.  Daddy was blowing kisses at my younger daughter – it was beautiful.   I’ve become very closed off emotionally and physically – it’s something I’m working on, but it’s one of my coping mechanisms.  Seeing this beautiful, pure moment from my Daddy, I said, “I want to get in on that.”  So I reached into the car, gave Daddy a hug, he pecked me on the cheek and told me, “You’re a good girl.”  Being me and unable to process the emotions at that time, I countered back, “Definitely, when compared to my brother.”  This made Daddy laugh, I said goodbye and walked back into the house – where the tears flowed. 

None of us know when the beautiful moments in life are going to pop up.  No matter what a family looks like or what they are experiencing – we’re all living life.  Every day we experience the beautiful and the ugly, the heart warming and heart crushing, the sacred and the mundane.  The extreme pessimist would focus only on the bad things and see no hope.  The extreme optimist would focus only on hope and not feel the reality of the situation they are in.  I choose to see the beauty amidst the heartache.  In contrast it makes the beautiful moments so much lovelier.  I choose to love and to be loved by my Daddy, cherishing, each “good girl” moment. 

“Now these three remain: faith, hope and love. But the greatest of these is love.”

Everyone loves a Parade

A few weeks ago it was my mom's birthday.  What she wanted for her present was a day with her friend, a lady's day of leisure, if you will.  So my gift giving was pretty easy - I took care of Daddy for that day.  Luckily we already had our agenda planned.

Each August, the teeny, tiny town next to us has an annual Tractor Pull and Parade.  It's been our tradition for a few years to go to the parade.  The kids love it because the folks who ride on the tractors throw candy!  Each year the kids come prepared with their grocery bags ready to fill with yummy treats.  Side note - I learned this year we tend to hang around the end of the parade route and in the future interest of my children's candy gleaning endeavors we need to move further up the parade route.  My Daddy interest in the event - he loves looking at the tractors.  The morning is a win win, the fact that both pig skins and snow cones are sold is a bonus.

Our morning started off without a hitch; mama dropped Daddy off at my house and we headed off on our journey.  On the way to the parade we made a detour to McDonalds for breakfast.  We were set to arrive in plenty of time, but had to make a bathroom pit stop at a local gas station.  Still we made it to our usual parade viewing area in plenty of time.  Since there was time to spare we crossed the street to buy those tasty pig skins.  Then we waited for a few minutes until the parade started.

I love parades, though I'm not normally an overly emotional person, a parade will make me well up and I become so overcome with emotion I usually shed a few tears.  Flags, veterens, the shriner's mini cars, high school marching bands anything- it's almost like I feel a sense of pride on behalf of whomever, that their loved one is in a parade. The roar of the fire truck signaling the start gets me everytime.  Since Daddy's been diagnosed with FTD and noises drive him crazy, I'm always on alert when the parade is about to begin.  Thankfully, every parade he's attended, he's been fine.  Maybe it's because he still understands the purpose of the noise - don't know the reason he can tolerate such a loud noise then later need to put in his earbuds because a conversation next to him has gotten out of hand.

After the fire engine has passed the first tractor rolls past with the Grand Marshall!  The parade has officially begun.

Now the real fun begins:  Tractor... candy... International tractor... candy.... Ford tractor... candy... Farmall tractor... candy... Allic-Chalmers tractor... more candy....  and Daddy's favorite,  John Deere.

The parade doesn't last long, but everytime Daddy sees that color green he gets our attention, "Hey, look at that John Deere!"  or "That's a goodlooking John Deere."  I love how excited Daddy gets about things and how it's such a joy for him to share this experience with my kids.  FTD has robbed us of many things, but it hasn't yet taken the core of who my Daddy is. 

On the following Sunday, I was in church and wouldn't you know, but the pastor was talking about parades.   He was using parades as an illustration of how time is linear so that it's hard from our perspective to see the whole picture because the vantage point we have.  So I told him I was stealing this for my blog as I was about to make a post on a parade. 

While we were sitting on the side of the road watching the tractors pass by we could only see what was before us, a few tractors that had already passed and a few that were coming our way.  Our field of view is quite limited.  That's how it is with life.  I can remember how my Daddy was, I can see how he is now and I can see how he's progressing with his disease.  Though it's hard to really remember how he truly was and it's difficult to remember how life was a few years ago.  I've read so much on FTD and I anticipate what lies ahead, but I don't know exactly how the diease will effect Daddy nor do I know how the progression will effect our family.  So we have right now, this time, this bit of parade, this John Deere and boy it sure is a goodlooking John Deere!

My kids with Daddy, their Papa & snowcones

I am a rock, I am an island...

People respond to trauma, tragedy, emergencies, etc in very different ways.  My initial reaction is to remain very calm, logical and resourceful.  When something happens I want to take care of the immediate need and research what I need to know for the future.  After the situation has long been under control and emotions have calmed down - depending on the severity of the event - I may freak out, a little.  That's how I was with Daddy's diagnosis.  Months after being calm, making plans and researching the mess out of FTD - I broke down and realized I was clinically depressed.  Thankfully that's under control, but I've been in a "new" phase for about a year.  I think of it as padding.   I'm aware of the changes in my dad, we discuss them, but I don't always feel or "let go"or share them with others.   I don't think I struggle with trying to have control because I know in life that isn't a reality.  What I want is to be STRONG.

In my early twenties I was a very huggy, affectionate person.  My mama complains that the older I get the more standoffish I've become.  Mostly I blame my children.  My hubbers and I are the proud parents to three kids; all elementary age.  The years are fast approaching when they won't hug me much - so I should savor the time, however some days I've been over-touched; this happened especially during the toddler years!   As a result I struggle with receiving hugs from adults.  I can handle the quick side hug or a fast in and out.  The thought of someone trying to hug & hold me overwhelms me.  If that happened I'd probably turn to mush and if I was mush how can I be strong for everyone else?

Today we went to church and at the end of the service the pastor per usual offered to pray for whomever wanted/needed prayer.  This was the first time in a long time I really wanted to go down for prayer, but I didn't.  I knew that I would just want to be held and just let all of my emotions, fears, pain - everything pour out.  Which I'm sure would accompany a good deal of tears and snot .  So I didn't go. Instead I thought of Simon & Garfunkel:  I am a Rock, I am Island

How often do we, do I  - do things like that?  Under the guise of needing to have control, to be strong, to move past this, etc, etc; we shut people out and we don't take advantage of those willing to share the burden.  Sometimes the thought occurs to me: if I'm trying to be so strong, will I turn to stone and not be able to feel the good things?  It's so easy to say, "but they don't know what I'm going through."  That's true - no one really knows exactly what anyone else is going through.  Still if someone is offering me a word of encouragement, a prayer, a "how ya doing", or even something scary like a hug - I'd be foolish to reject such things.  I need to accept them and not just accept them, but to share a bit of my struggle, a bit of my soul and maybe even turn a little bit to mush with them. 

Everybody needs a hobby

Daddy is built to be productive; it's the cloth he was cut from.  He started working when he was just a kid for uncles during the summer.  Not little "jobs" I'd give my kids today, but real honest to goodness hard work.  While still a teenager he entered the freight business.  His calves will attest to his many years of dedication - my husband described them recently as what you would see on a drawing of a superhero - hard angles not rounded.  Most years he would work two and sometimes three jobs to provide more things and opportunities for his kids, than he had for himself. 

Since being helpful is in his DNA, he's struggled with not working.  In the earlier stages of his disease he was still able to do yardwork (see previous post as to why we're thankful he no longer does this - though he still offers).   Daddy has always been helpful around the house; so early on he would cook, do laundry, dishes and try to tackle minor repairs.  The repairs and yard work were the first to go - he doesn't have the cognitive ability to follow the procedures to complete such tasks.  He still likes to bake cakes, but only can do so with Mama's help.  He's no longer home alone, so if he gets the urge to cook up something - someone would be around to assist.  Daddy still tries to do the dishes and laundry - though you have to check because they may not actually be washed or maybe they were run through a cycle, but without soap.  Since I have a large family, Daddy was so helpful when mount dirty clothes took over my house.  Nowadays I just send him sheets to wash.   As for dishes you definitely have to follow up.  Many times I've been over at their house, reached in the cabinet to pull out a dirty dish, bowl, fork, etc. 

It must be hard, losing the ability to provide even basic help for those who you've given your all to ensure their security and comfort.  With FTD it's hard to tell sometimes what Daddy's really thinking.  Thankfully, most of the time he's not too keenly aware of particulars of his diminished capacity. 

The main thing Daddy can still do and is perfectly happy to offer his services is Cutting Coupons.  He has been scissor happy for almost 2 years.  I coupon and his act of service started by helping me.  Each week we buy Daddy a double paper and he goes to town.  Now anytime we're in a grocery story, he picks up any flyer's that may have a coupon - just so he'll have you covered. 

You can see the affects of FTD on his coupon cutting.  In the beginning he would clip only the grocery item coupons, then came any store's coupon that was in the Sunday paper.  He started to clip out sections of the flyer's that look like coupons (anything that had edges).  Now we're up to just cutting out anything from the flyer's.  Today we saw where he had cut out the shape of a bottle of ketchup.   Though this does make me sad, I thought - Art Class.  We can take what Daddy clips and donate it for collages and other arts & crafts projects.  When he reaches the point where he can't handle regular scissors; we'll just buy the safety ones. 

When you are battling FTD you have to find what works: what's safe and makes your loved one happy.  Last Sunday Daddy called me up to see if I knew there was a coupon for the local mall and did I need it.  That's my Daddy, still taking care of his little girl. 

So if you have any coupons in need of clipping, I just might know a guy.

What's normal?

Today I received a phone call from an old friend.  We briefly caught up on each other's lives from the past several months and he mentioned that he's read this blog. I talked about how Daddy has been lately - what's become our new routine, our new way of life.  I let my mind wander to a thought I mull over when things are quiet.  Pause: I have a husband, three children and I work outside of the home, so life isn't often that quiet.  When I do have a bit of alone time my mind develops this before and after list.  It's almost like an advertisement for such & such diet complete with before and after photos.  In my mind I see two images of my daddy:  Before FTD and After FTD. 

My family is pretty upbeat.  We try to take life in stride and make the best of what we've been given.  We cope with our new way of life with a heavy side of humor / mostly self-depreciating.   On a recent trip to Dairy Queen , Daddy informed me that he's still quite capable of driving, "I know I could operate the car, I just don't know if I could get back"; he said with a smile.  Since I believe life is what you make it, I try to put on my big girl boots, keep calm and carry on. 

Since my mind wandered to the Before and After comparisons, I had a whole set of sad emotions welling up and thought a post is in order. 

Before FTD:
My daddy could do so many things and build anything.  He built my oldest daughter's nursery - complete with built in bookshelves and a window bench.  If I ever needed anything fixed, I'd give my daddy a call and he's been there and it would be fixed.  Many times on his days off he'd come over to my house and do yard work or some other project, just because he's built to be productive, it's who he is. For the last several years when he was still working, he'd call me everyday on his way home from work.  This became a joke between my mama & I because he'd call me to see if I needed anything, but not her.  Daddy and I would go grocery shopping and he'd make fun of my lack of math skills when I'd have to ask him for the hundredth time, "so if it's 3 for $1.00 it's how much each?" - finally I memorized the answer just to impress him. 
Daddy would pick up the kids from school and it was a must to stop by the store for a drink and snack.  He would take them to the dump, out to lunch or anywhere they wanted to go and they would rather be with him than anyone else in the world.  He would light up when any of the grand kids walked into the room. 
He was always fairly shy and wouldn't talk much.  He was so good and would do just about anything for anyone.  He was my daddy!

After FTD:
Daddy can't build things anymore - with our assistance we might be able to accomplish a small task, but no more flooring, decks, woodwork, etc.  When he tries to do yard work, if he doesn't break the tool, he ends up not finishing the work, working on a patch of dirt or just going over the same spot. 
Since Daddy no longer works or drives he doesn't run errands for me nor is he able to take the kids off, just he and them.  Though he still makes fun of my lack of math skills, our grocery shopping trips look quite different.  We'll walk through the store and he'll pick up things he has to have or things he want to get for the kids, all the while saying, "Now this is going to come out of my money!"  He still has a cell phone, though some times he has difficulty operating the phone; he doesn't call me too often.  Some days when I pick him up from the facility, he'll get a mischievous look in his eye and suggest we stop for ice cream.  If he's with us when we pick up the kids from school and if he has pocket money; Daddy insists we stop off at the store for drinks and snacks.  Daddy takes great pride in the fact that the grand kids have voted him best chocolate milk maker - probably because he pours excessive amounts of chocolate syrup in the mix.  He still adores the grand kids, but he doesn't light up when he sees them like he use to. 
Not so shy anymore, Daddy will talk to anyone and eavesdrops on most conversations so he can join the chat.  He is still a very good man and he is my daddy!

The way Daddy looks is different now too, often he'll have either a vacant or confused look on his face.  He looks older - though he's young, still in his 50's. 

It's been a hard shift.  Even as an adult, I relied so much on my Daddy and he did so much for me.  Now I have to protect him, make sure he's where he needs to be, help figure out the what he's trying tell us, and try to make sense of any compulsions he may have. 
Though the change has been very fast, and I've grieved losing aspects of what made him my Daddy, it can still be overwhelming when the Befores & Afters pop up in my mind.
Like all change the After becomes the new normal; we grow and adapt.  Change is inevitable and the best thing we can do is to is to put on our big girl/boy boots, keep calm and carry on.

The Ballad of Uwilda or Daddy might need a job with the DEA

Well it has been quite a while since I've written and I don't have any great excuse, but the one most people have - life has been busy! 

Some of the issues folks with FTD have are compulsions or paranoia.  The following is the still ongoing account of one of the issues we're facing with Daddy.

To put things in context let me begin with a backstory. At the end of school awards ceremony, Daddy was sitting with my  brother & me waiting for the event to start.  As we were in a school cafeteria, I suppose his mind wondered back to his school days.  One of his favorite stories to tell is when as a high school Junior; his agriculture class built the school's greenhouse.  The following year, according to legend, a non-legal herb was grown in that greenhouse.  Back to the present day cafeteria, as a lull fell over the crowd, Daddy leaned over to my brother & me and said, "Hey, do you think they still grow.... "  He was interrupted by my brother's shhh and me saying, "Daddy, we can't talk about that here."  This all ended with Daddy chuckling and the ceremony beginning. 

My Daddy loves to read the paper.  He devours the whole thing from front page to the last.  Any given week he can be counted on to tell you a recipe to try, if there is a house near you in foreclosure, but he delights in advising the who's who from the Arrest Log.  To protect the innocent & not so innocent, going forward some names will be changed.

A few weeks ago I went to pick up Daddy from the adult facility; he's been attending pretty much daily.  It was a bit apparent that he was slightly aggitated, so I had the dilemma: should I try to figure out what's going on or just ride it out.  Well I chose the latter.  That didn't last long, because once we were in the car, he opened up. 

Daddy: I just don't know what Ms. Suzy is going to do.
Me: About what?
Daddy: Uwilda (a worker at the adult facility), I read in the paper she was arrested, they searched her car and found pot!
Me: Really?
Daddy: Yup, she's got to be out on bond, I'm sure they're gonna come & pick her up soon and take her to jail.

Once I dropped Daddy off at home I called Mama.  She informed me that Daddy is convinced that Uwilda at the facility is the same Uwilda from the paper - she's not.  No amount of clarification, suggesting that there is more than one Uwilda (a common name), or assurance that the facility wouldn't hire a drug addict changed his mind. 

Now we know why Daddy sometimes chooses to hang out on the front porch of the facility.  He doesn't like the noise nor does he like Uwilda.  Still what can we do about this?  Mama and I brainstormed and we thought we came up with a great solution. 

The next morning on the way to the facility, Mama and Daddy stopped by the store where they get a biscuit.  Every day there has been a sheriff's car parked out front.  Well the sheriff wasn't there.  Mama went in and made inquiries, the waitress said it was the sheriff's day off, but what luck - he pulled up right then.   Mama explained our situation, Daddy's disease and how we need to clear the facility's Uwilda's good name. 

Sheriff: Hey Daddy, Uwilda at the facility is not the same that was arrested.
Daddy: She's not? No, she definitely is!
Sheriff: No, that facility is a good place.  They wouldn't hire a drug addict.  They have background checks.
Daddy: She's out on bond and it's just a matter of time til they come and get her.

After that Daddy calmed down a bit, but still was waiting on the police to come & haul Uwilda away.
A few weeks later, after no word about Uwilda, I picked up Daddy from the facility. 
We're pulling out and he says:

Daddy: I just don't know what Ms. Suzy is going to do.
Me: About what?
Daddy: Uwilda, she's got arrested for pot and is out on bond, they're gonna come get her any day.
Me: No Daddy, that's not the same Uwilda. I read the newspaper and it's a totally different Uwilda.
Daddy: Really?  Hmm, the Sheriff told me it was a different Uwilda.
Me: That's right.

Victory!  Maybe we've moved past Uwilda.  Last week I picked him up.  Uwilda was there, Daddy was nice to her, made small talk - very polite. 
Daddy loves to bake cakes, though he can no longer make them by himself. Daddy and Mama made a pound cake and took it up to the facility.  Uwilda loved it and Daddy was happy.  Finally it seemed we could move past the Uwilda issue. 

Then Friday, Daddy's reading the paper again.  Opened up to the Arrest Log & he gets upset. 
Daddy: She's done it again.  A Uwonda was arrested on disorderly conduct!
Mama: (she looks at the paper) Daddy, that Uwonda not Uwilda!  It's a complete different name.

And the beat goes on...

Used Books

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.

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.

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.

It's the end of the world as we know it...

Flashback: July 2009

 Daddy and I had one to the eye glasses store to get an exam and pick up some new contacts for me / glasses for him. He's always prided himself on his 20/20 vision, but recently the dollar store readers just weren't cutting it. As we're filling out the mandatory forms, I notice my daddy is going really slow and seems a bit confused while filling in his answers. I made a mental note to myself: "One day I'll have to take care of my daddy" He was 55 years old.

Over the next year and 3 months, daddy got into 2 wrecks: one of which he had no idea what happened. Would increasingly get frustrated at ATMs, fastfood and store cashiers (he couldn't work the card machines). He refused to use one gas station, insisting that they would not let you buy gas. We thought maybe it was because he'd been working the night shift. During the summer of 2010, the Dr. gave my dad some meds to help: uppers & downers. Physically he looked better, but the confusion remained.

It hits the fan: Halloween weekend 2010

 My mother in law was moving into our house and daddy helped by driving the moving van. He'd been taking a lot of vacation lately, but since he had a good bit we weren't too concerned. While packing up my Mil's house - my dad was acting a bit out of it. I overheard him on a phone call with a work buddy and could tell something was up at work. We asked daddy what was going on and he said he couldn't remember if he requested the time off he'd been taking.

While making the 2 and a half hour drive from my mil's house to mine, my daddy followed the car I was driving. Once we arrived he let us know that if he had not been watching my car he doesn't know if he would have made it home. That was the last day he drove.

He went back to the Dr. Then off to the Neurologist. Finally a Neuro Psychologist for testing.
The neuro psychologist told my dad if he didn't know better he would have thought daddy was trying to fail the testing in order to get on disability. This didn't sit too well with daddy as he's the hardest working man I know. A few weeks later I read the report from the testing. Going over new words I'd never heard. Aphasia, FTD, Pick's disease, Alzheimer's was the only word I had previously known. So I did what I do.. research. Well after reading about FTD I thought, that's it, that's what my dad has. I was the first one to diagnose my daddy. The other Drs. just said he had early onset Alzheimer's. Since he was so young we went to get a second opinion. On February 2011 he was officially diagnosed with FTD. Thankfully his new Dr. was a specialist in FTD.

Check up: March 2012

 During that first year mama and I worked hard to put affairs in order. Daddy carries around a small amount of cash, mostly so he can buy the grandkids snacks. At his check up the initial report was he had declined 50%, but after hearing the ways in which he is high functioning his scores were padded a bit. As of today he's attending adult facilities 2-3 times a week.

To blog or not to blog?

Like so many, who have a love one with FTD, I've been looking for an outlet for the things I think & feel.  To blog or not to blog, that has been the question.  On one hand I feel that I do not have near enough time, still I think it's very important to get all of the thoughts & emotions I have out instead of holding them inside.  Why pick this venue? A bonus - others may benefit from what we're going through.

Backstory:  I'm Don's Daughter.  My daddy was diagnosed with FTD back in February 2011.  Will tell the full story in a later post.

About me:  I'm in  my mid-30's.  Married with 3 kids.   My mom & dad have been married almost 40 years.  These are my thoughts, emotions, advice, etc.  Please do not be offended at my lack of spelling & grammar skills.  Hope you enjoy the journey.