Thursday, November 5, 2009

Father's Fight

Back in the day, my dad was a rock of strength, an example of what work ethic looks like. He knew only one way to conduct himself at work, and that's full tilt.

From about 1980 to 1997 or so, he worked as a dairy hand. He would spend all day herding dairy cows around, hooking them up to machines and cleaning after them. It was rough work and long hours. He'd work from 9 a.m. to the early afternoon, then go back in at 9 p.m. and work until the wee hours of the morning. And he did that for many years, hardly taking any vacation time, working six days a week, working Christmas, New Year's, Thanksgiving, everything.

Nowadays, my dad is fighting a debilitating disease. He's not a rock any more.

In 2005, he was diagnosed with Progressive Supranuclear Palsy. I'm blogging about it for a couple of reasons, mostly to bring awareness to his horrible disease. Progressive Supranuclear Palsy, or PSP for short, is along the lines of Parkinson's Disease. It's a neurological disorder that is fairly rare, affecting about 5-6 people out of every 100,000.

According to CurePSP.org, these are some of the major symptoms of the disease:

> Loss of balance.
> Changes in personality such as a loss of interest in ordinary pleasurable activities or increased irritability.
> Weakness of eye movements, especially in the downward direction.
> Weakened movements of the mouth, tongue and throat.
> Slurred speech.
> Difficulty swallowing.

That pretty much describes my dad. He's confined to a wheelchair because his balance is gone. He started to lose his ability to speak a couple of years ago and, well, the last conversation I had with him was awhile ago, and I didn't know at the time that it would be my last real conversation with my father.

It's been tough watching him go from a strong middle-aged man to how he is now, in a wheelchair, not talking, unfixed gaze, but we all know the same toughness that helped him support a wife and four boys is still there.

Still, there is no cure for PSP and the outlook for PSP sufferers is pretty grim, so we're trying to enjoy my dad while he's still with us.

Now, I'm not one to ask "Why me?" and things like that. I've always believed things happen for a reason. My parents have never been that kind either, to question their lot in life. We were dirt poor growing up but my mom has never received a cent from welfare, never applied for any financial assistance when she could have qualified for it.

But I do think something is quite unfair about this whole situation. My parents were both born in Mexico and came to the United States in the early 1970s, to provide a better life for their future children. They struggled a lot, but were able to raise four boys, became citizens, were always productive members of society, paid taxes and worked hard at everything. In the late 90s, my dad was laid off and we all got together as a family to figure out what he could do. We came up with truck driving, a respectable profession that pays well but can be tough and challenging.

He got into truck driving and found work as a long-distance truck driver. He'd drive all over the country, going from Southern California to Florida to Delaware to Pennsylvania to Utah. He was always calling us from places I'd never dreamed he'd visit - Alabama, Tennessee, Ohio. And he'd worked so long and so hard before that this was a great change of pace for him.

And my parents were doing well financially, well enough that they bought a house in their hometown, hoping and expecting to spend a lot of time between Southern California and Mexico. They had their own trucking corps briefly, had drivers who worked for them, and things were going well.

But instead of enjoying their time and relishing in the rewards for years of sacrifice, my mom and dad now have to deal with this bullshit. It just doesn't add up.

But we all play the hand we've been dealt, and my parents fight PSP every day. It's a challenge mentally, physically and emotionally, but they aren't backing down. My mom keeps the faith in a cure, as do we. Until then, we all enjoy the time we have with him in our lives.

This is him with his in-laws - my mom and seven of her brothers and sisters - at his 60th birthday party earlier this summer.

My brother Danny and his wife are hoping to take my mom and dad to Hawaii. It's a place he's always wanted to visit, and was a bit out of his trucking route :) They will get to spend about 10 days out there, and my parents can take a real vacation for the first time in quite a long time, if everything goes as planned.

Unfortunately, my dad was taken to the hospital on Wednesday with pneumonia. We don't know much more than that and hopefully we will get some positive news and hopefully he can take that trip to Hawaii.

If everything goes well, I might have the chance to spend some vacation time with my parents next spring. We've talked about a cruise, and I think it would be great to take my mom and dad to Alaska. I'm not sure my mom is that thrilled about it but I think it would be great for my dad to see Alaska and to get away from things once more.

We'd decided against traveling a while back because of the potential difficulties of traveling for my dad but this story here made me think twice. And it's great that Danny and his wife are in a position to be able to take my parents on vacation as they're footing 100 percent of the costs.

Since I live real close to my parents, about five miles away, I try and take my girls over often. It makes me happy when my girls are with their grandparents. Since both sets of my grandparents lived in Mexico when I was growing up, I never got to spend a lot of time with either of them growing up. But I want things to be different with my own children and their grandparents, so I do what I can. They love their Papa, but they only know him as he is now, not the pillar of strength he was when I was younger. Still, they enjoy seeing him and I know they bring joy to his life as well.

While this disease is vicious and unrelenting, that doesn't mean it will break any of our spirits.

8 comments:

5thsister said...

Oh Luis! What a courageous battle your dad is fighting. I will offer up prayers as he continues to fight the fight.

Do you think it might be aspiration pneumonia? Common in those with swallowing issues.

Willoughby said...

That was a beautifully written, touching story. I'm so sorry that your dad is fighting this awful disease. You're right, it isn't fair.

I think it's wonderful that you and your brother are both planning vacations to include your parents. We have taken quite a few vacations with my parents since my dad became disabled (he has a disk problem that has destroyed the nerves in his back). It's challenging at times, but also rewarding to have them with us.

Jephy's Mom said...

LB, so sorry to hear that you and your family are having such a difficult time.

I agree with Willoughby. You guys are definitely trying to do your best in a very difficult situation. Sounds like something your Dad would do!

I'll keep you in my prayers as well.

L.B. said...

Thanks ladies. That was a difficult post to write. It took me a couple of weeks, just writing bits and pieces at a time.

My dad was in the ER for awhile, more than 12 hours, waiting for a room to open and finally early this morning he was being moved into a room, last we heard.

The doctors were still running tests but from what my brother told me (he was with them the whole time) and from what I've read, it sounds like it could be aspiration pneumonia.

Raoulysgirl said...

Well, now we can see where your strength and determination comes from! What a great pillar of strength!

It is wonderful that you are able to take the girls to see your parents often. We lived next to my grandparents until they passed away. I spent the first nine years of my life totally enwrapped by their love and it made me who I am today!!! That's the main reason that, when she didn't want to live alone, Raouly and I wanted my mom to live with us. My girls can only benefit from it!!!

Hang in there! I'll keep your family in my thoughts and prayers!!!

Tattoos and Teething Rings said...

I wish all the best for your father, how heartbreaking.

Angie Eats Peace said...

I will never understand why such unfair things happen to good people.
Your girls are lucky to have him, and vice versa, that last picture tells it all.

Gracey said...

This post was very moving and beautifully written.

I wish the best to your dad, and I admire you for your spirit and determination to fight and enjoy every single day you get to spend with your dad.