What is a normal life, anyway?

Screen shot 2015-02-21 at 2.31.54 AMTonight I tweeted, “Will things ever be normal again?” A friend responded, “Define normal.”

I told him it had to do with my father being in the hospital (Yeah, he’s back after his blood pressure dipped and he developed a fever) and that, for the past month, my only two destinations have been work and nursing home and/or hospital.

But he’s right making me consider a definition. What is a normal life, anyway?

I can’t say my life was super ideal pre-my dad’s pretty debilitating fall and hip trauma, but I wasn’t mired in constant worry about them unless I’m completely immersed in my work. Today, even when I’m at work, they’re all I think about.

My father has had Parkinson’s for a little more than 18 years, and my mother is his primary caretaker, despite working part-time. I always went to their house to visit, but in 2014, as his Parkinson’s progressed a bit deeper, I went home nearly weekend to give her some relief.

But this is different. Going from work to hospital till nearly midnight, and back home (with mom; she’s asked me to stay with her until my father comes home), and back to work again, is EXHAUSTING. On top of that, not staying at my own apartment means a half hour ride to my place to pick up clothes once or twice a week. Then there is the mental party, constant worrying, even though he’s in a facility crawling with nurses. It’s tough.

So, no I can’t define normal. But I do know it’s not this.

Factor in my father’s inability to speak clearly (something that started about eight years ago, and has gotten worse since) and mild dementia, and I’m left mentally and physically drained.

I’ve written this in the past: None of this is about me. It’s incredibly tough on the entire family. But this is my dad. I feel like I have to be there for as many hours as possible every day. I’m also there to offer comfort to my mom, who I can tell, is scared about this all.

As abnormal as this may seem, I’m glad I’m here with her, and in frequent touch with my brothers. If I could go back time, I’d prevent my father from falling, but this closeness that we’re feeling as a result of this sad trauma is priceless.

Still, I wonder: will I ever have fun again? Will I ever just aimlessly walk around after work and dip into a store, or into a place for a glass of wine? It doesn’t seem that way at all.

Latino Resiste Presents Salsa Choke

FREE MUSIC DOWNLOAD! Great stuff from CALI, Colombia!

LATINO RESISTE

CHOKE promo 1
Salsa Choke (Pronounced Choh- kech) is the newest approach from a whole new generation of Urban Artists to the always expanding Latin Diaspora.

Blending aesthetics from Crunk, Hip Hop, Reggaeton,and latin sounds, with Colombian Afro Pacific music,
the result is a unique approach to Salsa.

Most of the cases sampling Rap anthems and adding their own latin flavour, the result might be as wicked as this one:

The whole compilation selected by Marlong can be grabbed right here for
FREE DOWNLOAD

Being one of the most underground genres in South America, Salsa Choke style of dancing was
seen by millions when Colombia’s soccer team celebrated every time they scored.
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Triggering right there an exhaustive expansion for that unique sound.

In order to give the compilation its real credibility, we went straight to the source.

Cali, Colombia.

And asked the most prominent promoters of the genre to curate and select the…

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On ‘working’ from the hospital or nursing home.

Screen shot 2015-02-11 at 4.24.53 PMWhen I am in the office, I feel distracted by wondering how my father and mother are doing, phone calls to and from doctors, insurance companies, social workers, and attorneys, and the dozens of relatives calling, texting, and Facebook messaging me from overseas to check on my dad.

When I am working from the hospital, and now, nursing home/rehab facility, I am often interrupted by speaking with my mother, trying to figure out what my father wants/needs (his difficulty speaking due to Parkinson’s was made worse by his hip trauma), and calling on nurses and nurses aides for help.

This is tough. My brain feels like scrambled eggs.

Still, nothing compared to what my parents are experiencing. I feel very faint today, and almost guilty for admitting to it, because sitting around worrying, or pacing while making phone calls, doesn’t exactly add up to rigorous exercise that would warrant being dizzy. :/

 

On Frontline: Why Is It So Hard for Doctors to Talk to Patients About Death?

Screen shot 2015-02-10 at 11.13.30 PMVia PBS’ Frontline / Tim Molloy:

Dr. Atul Gawande just wanted to give a patient some hope. But he ended up saying something he would regret.

In FRONTLINE’s new film Being Mortal, Gawande remembers treating Sara Monopoli, a woman who was diagnosed with Stage IV lung cancer at 34, in the ninth month of her pregnancy. After giving birth to a healthy baby girl, Monopoli was diagnosed with a second disease: thyroid cancer.

In the film, Gawande tells Sara’s husband, Rich, that he knew she would almost certainly die of lung cancer, but he still gave the family hope that an experimental treatment might help treat both cancers. Rich surmises his family’s hope must have been infectious.

“You had joined us,” he tells Gawande. “We had our sunny disposition, hoping for the best.”

“The reason I regret it is because I knew it was a complete lie,” Gawande replies. “I just was wanting something positive to say.”

The conversation captures the dilemma suffered by doctors, families and patients with a terminal illness. The patient faces a painful decision: Whether to keep fighting a disease through every last treatment, trying to live as long as possible, no matter how painfully, or to live out the final days as well as possible.

Read more & watch video here:

“It was not so good.”

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My parents and I with my nephew at his preschool graduation in June 2014.

Earlier this evening, my very tired mom and I walked through the hallways of Hackensack Medical Center so we could meet my dad, who was being transported by paramedics, to a long term rehab facility in Fair Lawn, NJ: Maple Glen Center, a Genesis Healthcare facility.

On our way to the elevator, we encountered a super cute older gentleman who looked a lot like Fred Mertz (a character from 1950s sitcom, ‘I Love Lucy.’) He asked us who our patient was. I explained. He asked what rehab center my dad was being moved to, because his mother was in the hospital, and the facility she was in previous to her hospital admission, was “not so good.” Turns out it Care One Teaneck, which is a sister facility to Care One Wellington, where my dad was a patient in for about two and a half days before his blood pressure dropped due to dehydration and he was rushed back to the hospital. (Turns out the same happened with the cute little old man’s mom.)

This is our new reality.

This is what we have to deal with from now until my dad is well enough to come home, or goes to a place that is not home. People who have gone through the nursing home/rehab facility experience advise us to be there “at all times,” a near impossibility for my immediate family; we all work. (Today I filled out paperwork for my mother to take a leave of absence from her main part-time job, but it’s important for one of us kids to be by her side to provide her some respite.)

It’s really hard to swallow, but I have to be the stronger person. I have brothers, but I can see how this is harder for them. Two sons that always saw our dad as an active, strong, and funny guy, and how he’s a shell of the person he once was. I’m daddy’s little girl. I tell it like it is. I am there and am handling more of the being there, and paperwork of healthcare, because I must.

I cannot seem to form tears about my dad’s condition. I hold it in, save for every fourth day, when I can no longer hold it and something makes me angry to set me off. Yesterday, it was an argument with my brother about giving my aunt a ride somewhere.

I aspire to be like my mother.

I’ve always been used to her being a super strong woman who doesn’t scare easy. When I was 19, I feel asleep while I was driving and got into a terrible accident, dislocating my hip, breaking my wrist, cutting my forehead pretty deeply, and bruising my knees. I remember my dad crying in the intensive care unit, setting off my own waterworks, and my mom telling him to stop, that I’d be fine. She then grabbed by hand, gripped it, and told me to stop crying; that I’d be back to normal in no time. She was right. I was walking in less than eight weeks.

I really wish I could revert back to age 19, and my mom can once again be that warrior woman who, to this day, at age 69, works a couple of part-time jobs. It’s so hard to have a dad who looks scared and confused because we leave him at night, and a mom who is teary about her partner of 45 years (this Feb. 22!) not sleep with her at night.

It’s obvious I need to be that warrior woman. But it is tough. I may have a white collar job, and a master’s degree, but I feel I’ll never be their caliber of tough.

 

Celebrating my dad: ‘a tough guy, a smooth talker, a brave man and an undeniable natural comic.’

My dad, Virgilio Vergel.
My dad, Virgilio Vergel.

Having an illness or being close to death is not a competition, but as my father’s Parkinson’s disease progresses to a point where he can no longer safely swallow food or drink, I can’t help but think of people who have definitely had it tougher:

Children with cancer. Young people whose lives were taken by horrible accidents, senseless violence, or grave illnesses. Mothers who have died after difficult childbirths, and so on.

This is not to say that my father’s illness isn’t a big deal. At this very moment, it pains me to see him going through bouts of discomfort (but no pain, thank goodness). But knowing that, save for the past two weeks since he suffered a fall and hip fracture, it’s important for me to recall, and remind others, that he has lived a pretty wonderful and full 71 years, and he may continue to do so, albeit with some changes (such as a feeding tube).

My dad with me and my brother, Rich, in Wildwood, NJ.
My dad with me and my brother, Rich, in Wildwood, NJ.
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Thanksgiving eve in 2011 (?) with my cousin, Maria, her husband, Gonzalo, and my brother, Richard.
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Baseball? I learned that from my dad. (After my brother, Richard, took an interest in the Yankees, my dad bought us some Yankees hats, and took us to some games. Yet he preferred the Mets a bit more, because they had more Latinos on the team. Ha!)
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Hanging out with my brother, Richard, and my dad, as usual!
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Mom and dad by the Christmas tree at their first home in Paterson, NJ. This was a big accomplishment for them. They wanted us to grow up in a house they owned.

Don’t get me wrong, this is, without a doubt, the most incredibly difficult thing I’ve ever experienced in my life. But this isn’t about me. This is about the man who raised me and how I choose to remember, celebrate, and even laugh, about the way he was.

Such as:

  • The time he taught me how to ride a bike, and later, how to drive a stick shift. (There was lots of yelling by him, whining by me [I can’t do this! I don’t get it!], and finally, victory.)
  • The countless time he played music from his beloved Colombian coast. It taught us such an appreciation for our parents’ home country.
  • The times he taught me to dance salsa and shimmy my shoulders along to various Colombian songs.
  • The jovial attitude he had with my friends, from making Kimberly laugh on our way to school (he often drove us), the joking around with Judy and Sibila after church, to actually going to happy hour (!!!) with Ysa, Barbara, and Melinda when they all worked part-time at Home Depot.
  • The jokes he always told among his and my mother’s family and friends. He consistently had his audience in stitches!
  • The time he and my ex-husband, Dave, grabbed pineapples off of the swim-up bar in Cancun and posed for a silly picture.
  • The way he enlisted my little brother, David, for various fixer-up projects around the house. It made David very good at carpentry and things.
  • The way he and my mom proudly bought his first home for us in Paterson, NJ, and later, their second home in Clifton, NJ.
  • The way he made sure to take us on a vacation on more than a few summers, even though it was right in state, since it was all we could afford: a full week in Wildwood, NJ. It was heaven! My dad loved to swim and he spent hours in the ocean with us.
  • The way he and my mom tried so many ‘firsts’ with their first-born, Richard. From karate classes to Boy Scouts, Richard was their first-generation dream realized.
  • The way he always talked a mile a minute in between his full and part-time job, or on his lunch break, going over his never ending to-do list.
  • The way he preferred to drive home for lunch, because he always preferred my mother’s cooking to anything else.
  • The way he had sheer pride in my mother. He always bragged about how beautiful she was when he met her on a bus in Barranquilla, Colombia, and how beautiful she was every day.
  • The way he loved his two sisters, “as elegant as they are beautiful,” he’d say, and he felt the same way about all of his nieces.
  • The way he was very proud of his younger brothers, as they were able to attend colleges and go on to stable careers.
  • The way he preferred soccer to baseball (who wouldn’t?) but because he had so much pride in having children born in the United States, he’d take us to Yankee games, and wanted us to speak to him in English as much as possible, so he could learn.
  • The way he and my uncles would take us to the park on spring and summer Sundays for pick-up games of soccer and softball, keeping my brothers and cousins entertained for hours on end. (And, again, despite not liking baseball, he was awesome at hitting [what we thought were] the biggest home runs, ever!)
  • The way he bought us puppies from the pound to have as pets in order for us to have the full ‘American’ experience (even though he didn’t exactly love dogs.)
  • The way he picked up slang from his co-workers at the General Electric plant in Paterson. (He’d come home saying phrases like, ‘What it is?’)
  • The way he initiated conversations with strangers and quickly won them over with a sense of humor, or genuine interest in where they were from. It’s something I inherited.
  • The way he never compared me to other girls or women, respected my choices (from my decision to get separated, and later divorce, to my more than one career changes), or pressured me to have children.
  • The way he encouraged my love of travel. After all, it’s what he and my mother came to this country for: for us to do the things they couldn’t.
  • The way he loved to dance at parties. This wasn’t limited to salsa, merengue, and I’ll never forget him asking me and my friend Marisol to get on the dance floor when they played a dance pop song at a Sweet 16 (I was mortified, at first; there was no one else on the dance floor!) and instantly having us laughing with his ‘pop’ dance moves. Mortification over.
  • They way he was passionate when arguing. (To put it bluntly, his quick and fiery temper, which I inherited!)
  • The way he adored cinema, especially Westerns. (Steve McQueen was one of his favorite actors.)
  • The way he bragged about my writing, and later, my journalism career. (It meant a lot to me.)
  • The way he’d lift weights at home, and cycling with his Peugeot 10-speed was always his favorite form of exercise. Getting us used bikes was a priority, and he always encouraged us to go for bike rides.
My dad and my nephew, RJ, at a birthday dinner we had in 2012.
My dad and my nephew, RJ, at a birthday dinner we had in 2012.

These are just a fraction of memories of my father and I love that writing the list brought many smiles to my face.

As a reporter for the Home News Tribune, I wrote a column about my dad (read it below), when he was about to get Deep Brain Stimulation surgery in 2007. This excerpt encapsulates why I always knew this disease, while not as terrible as some others, would become progressively difficult for him to accept, and for his loved ones to see:

I’ll always remember the day dad told me he thought something was “off” with him physically. He and I were eating breakfast at the kitchen table, and he actually looked scared — something rare for him, at least in my eyes.

This is a man whom, ever since I was little girl, I’ve looked at as a larger-than-life personality with an appetite for hard work. He is a tough guy, a smooth talker, a brave man and an undeniable natural comic.

It seemed his Parkinson’s progressed slowly at first. We have had such great laughs, and he’s enjoyed time with us, and with his grandson, RJ, who made him light up so many times. But as the years passed, he has became more of a prisoner in his own body. The way Parkinson’s affected his vocal chords is especially tough, as this is a man who loves to express himself.

Nearly 17 years after he was diagnosed, this fall that fractured his hip, this one acute trauma—a common one for the elderly in this country—was enough to alter his status. This is not going to be easy for us, but, again, my main concern is that he is not in pain, and above all, comfortable.

I’ve always heard the following advice from people who have lost parents: spend as much time with your parents as you can, because you will miss them when they are gone. It is true. I’m grateful that we have had so many good quality years with our father (and, of course, that my mother is as healthy as she is hardworking). But for those of you who live in other states or countries from you parents, this doesn’t mean you can’t do the same. Though I’ve always lived in close proximity to my parents, I feel that simply keeping them informed about your achievements, your adventures, or your travails, is important. This is the kind of thing that brings joy to my immigrant parents. And I know this from the many conversations I had with my dad early on in his Parkinson’s diagnosis. Parents want to know they’ve raised happy children. So tell your parents how much you love them, yes, but just tell them about your life. They’ll appreciate it.

Home News Tribune Online 03/17/07

GINA VERGEL
gvergel@thnt.com

As my father was wheeled away into the surgery wing at Robert Wood Johnson University Hospital earlier this week, my mother, brother and his girlfriend and I all looked at each other as if to say, “What do we do now?”

The answer was simple. All we could do was wait.

On Tuesday, my 63-year-old father — the superhero of our family — underwent nearly seven and a half hours of Deep Brian Stimulation, or DBS, surgery in an attempt to slow down the progression of Parkinson’sdisease that he’s been living with for the past nine years.

Parkinson’s is a neurodegenerative disease whose primary symptoms are tremor, rigidity, and postural instability. The tremors that once plagued my father have long passed. It’s the rigidity and postural instability that severely interfere with my parent’s quality of life — dad wakes mom nearly every two hours at night so that she can help him adjust himself in bed or take a trip to the bathroom.

It’s tiring.

Almost one year ago, I dragged my parents to a support-group meeting for patients who have had DBS at Robert Wood Johnson. While the surgery does not cure the disease (there is no cure), it can help manage some of its symptoms and, hopefully, cut down on the amount of pills (25) that dad pops every day.

My father, stubborn as always, wasn’t exactly thrilled to go to a support meeting an hour’s drive away from my parents’ home in Clifton. What he saw there, however, led us to that waiting room this week.

People he thought were relatives of Parkinson’s sufferers began speaking about their recovery after the surgery, flooring my father with their varying degrees of composure. He was sold.

I’ll always remember the day dad told me he thought something was “off” with him physically. He and I were eating breakfast at the kitchen table, and he actually looked scared — something rare for him, at least in my eyes.

This is a man whom, ever since I was little girl, I’ve looked at as a larger-than-life personality with an appetite for hard work. He is a tough guy, a smooth talker, a brave man and an undeniable natural comic.

That day, however, something was wrong. A slight but frequent tremor in his right arm, he said, scared him into avoiding the doctor. Eventually he went and found it was the beginning of Parkinson’s disease.

So began a long and hard journey that included him having to retire early and, even worse, having to give up driving. A difficult part for me was how the natural charismatic expression on his face was replaced by a gaunt look — another symptom.

On Tuesday, as my mother and I took a seat in one of Robert Wood Johnson’s waiting rooms, mom turned to me and said something that I’ve never given much thought to.

“Isn’t it something that in the 37 years we’ve in this country, we’ve never had a hospital stay, much less a surgery,” she said. “We’ve been lucky, thank God.”

And yet here we were, stuck waiting as surgeons performed a crainiotomy on my father.

While the wait was tough, chatting with relatives of others in surgery was a positive experience.

Surgeons said the operation was a success but that my father would have to work hard when he got home.

And so with our help, he’ll work hard. Anything for our superhero.

Gina Vergel can be reached at (732) 565-7228 or at gvergel@thnt.com

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With my parents, Virgilio and Maria.