Tuesday, May 31, 2011

Tunes On Tuesday

Rascal Flatts, I Won't Let Go

It's like a storm
That cuts a path
It breaks your will
It feels like that
You think you're lost
But you're not lost on your own,
You're not alone

I will stand by you,
I will help you through
When you've done all you can do
and you can't cope
I will dry your eyes,
I will fight your fight
I will hold you tight
and I won't let go

Oh I'm gonna hold you
and I won't let go
Won't let you go
No I won't

Just an all around good song

Tuesday, May 24, 2011

Tunes On Tuesday

I love this whole song, but I resisted the urge to post all the lyrics.

Sometimes I close my eyes and think that these would be the kind of words my dad would use if he could even grasp the idea he had to say goodbye to us...

Never Alone
"My love will follow you stay with you
Baby you're never alone"

Tea Tuesday

I need this mug. Caregiving to any extent and my dad like this could totally get me in the runnings to be a supermodel. :)

10-12-10_Tea (6)ed
Tea Tuesday is reminder to you too, my friends and wanderers that found your way here. Remember that all the good you do won't get done if you're not around or if you aren't properly taking care of yourself.
So, please, take a minute to relax with me at some point today.

Tuesday, May 17, 2011

Tunes On Tuesday

I posted before about a Rhianna song that wasn't meant for my family's situation, but speaks to me so loudly! I found a video!

Love The Way You Lie, Pt 2
On the first page of our story
the future seemed so bright
then this thing turned out so evil
I don't know why I'm still surprised
even angels have their wicked schemes
and you take that to new extremes
but you'll always be my hero
even though you've lost your mind

(seriously, that bolded part gave me chills the first time I heard it)

Thursday, May 12, 2011

He's So Young...

It's not uncommon for people to be shocked about my dad's condition due to his age. "Dementia? He's so young..."

Although my dad was 54 when he was diagnosed, he was having predominant behavioral changes before then. That is why we were seeking answers from doctors to begin with. Frontotemporal Dementia is one of the forms of dementia that does affect a younger generation. Typically, from what I've read, onset is between the ages of 40 - 70 years old.

So, aside from all the other difficultes with this disease, the behavioral changes and loss of emotion for example, age is another giant issue to deal with. Like my dad, a lot of people who get this are still of working age with bills to pay and families they are caring for. There's a loss of income, working spouses/(often times) children still in school have to become caregivers and all future plans (because at age 40 - 70, you still expect you have a future with a loved one) are out the window.

And that's once you get a diagnosis! Because of his age, no one really thought about dementia outside of us speculating at first. We only knew about Alzheimer's before this and although my dad had his memories, we went even that route trying to find answers, or at least to rule it out. A specialist's office shrugged everything off that was going on with my dad as depression - exercise, take some anti-depressants and all should be well soon. Then when that wasn't working, maybe it was his blood pressure medication. In the end, an MRI was the only thing that really got us a solid answer once a specialist saw it. From there, some more testing was done to see how advanced he was with it.

In hindsight, I'm not sure what's worst ... not knowing and being so confused before or getting an answer and having it been this.

Link of the day: The Enigma of Early-Onset Dementi

Tuesday, May 10, 2011

Tunes on Tuesday

Kelly Clarkson had a CD out around the same time my dad was diagnosed (and I was stuck between moving away or staying home) and this song just hit home. Still does...

Kelly Clarkson's Save You
I wish I could save you...

I wish I could say to you
It's gonna be alright...

Didn't mean
Didn't mean to leave you stranded
Went away 'cause I didn't want to face the truth...

There were ties I'd wonder
Could I have eased your pain
Why did I turn away...

We can pretend nothing's changed
Pretend it's all the same
And there will be no pain tonight
It's gonna be alright
Save you
I wish I could save you
I'm not going no where

Acoustics are a little shotty at points, but this is a great live version...

Thursday, May 5, 2011

First Signs

Frontotemporal Dementia is actually a general term for a grouping of conditions. We believe my dad's to have begun with the one affecting his social skills and ability to be empathic of others. We noticed things like:

- my dad's lack of care for his family ~ the man that used to hug us goodbye, help us pack up our car if we were off somewhere (like me back to school), etc. would barely acknowledge us walking out the door. He'd just keep watching TV.

- he was very impulsive ~ speeding when we were in no hurry, taking things he wanted without asking (or, in stores, without paying for them) and we found out later, he'd been leaving work for some time to just go stand around in a store nearby.

- my dad asking questions to strangers that you just normally wouldn't ~ Are you pregnant? Is your daughter adopted? How much is your mortgage? What's that tattoo of?

- he was also obsessed with telling a handful of stories, mainly about his parents dying and some fight he got in once. These stories were very out of character (he rarely talked about his parents' car accident ever) and often they were quite randomly brought up ... and he was determined to tell them to whoever was around, day after day if he repeatedly saw someone.

In hindsight, there were probably a lot more signs for several years.

Initially, my dad was diagnosed with depression. This diagnosis came from even a doctor specializing in Alzheimer's in Philadelphia.

We were told daily exercise, maybe antidepressants and time were all that was needed to get him back to himself. I think we all hoped that was the case, but knew better at the same time. We continued to look for answers...

Link of the day: This is one of my favorite links to use when informing someone about my dad's condition. It's quite detailed and yet fairly simple to understand, unlike a lot of sites and sources which describe FTD - Frontotemporal Dementia

Tuesday, May 3, 2011

Tunes on Tuesday

Not a day goes by I don't wish I had you.
So in a way, I'm glad you're still here.
It's a bitter sweet victory.
Lovin' the ghost in front of me.

Sunday, May 1, 2011

Dementia Links

My dad played football and so this article caught my interest: Duerson Suicide Has Ex-Athletes Questioning Their Own Exposure To Brain Damage - http://www.bvwellness.com/2011/02/24/after-duerson-suicide-other-athletes-ask-were-football-related

Some comments:
- While a lifelong football fan, I am beginning to question whether to support the sport. As with hockey, the players have grown too big and athletic and the damage caused by their collisions has to be appreciated. I absolutely believe concussions will occur more frequently and also believe they have long term impact. Cases such as Duerson's lead me to believe that I can no longer support these sports with a clear conscious.

- Is this game worth it?

My comment: My dad has frontotemporal dementia (FTD), an early on-set degeneration of the front of the brain. It is still fairly "new", but specialists are starting to think there's a link with brain trauma and this condition... and they are seeing symptoms in A LOT of athletes, especially football players.

There are no words to express how sad it is to lose my dad this way.

There were some more articles that followed.

If you followed this story, there was a big announcement that the results were in on Duerson's autopsy and the cause of death. However, when you went to the article, all that was there was a description of the body when found and nothing on the actual autopsy or if anything was seen during it.

Apparently, Duerson's brain will be studied seperately and those results have not come up yet.