Lutheran comfort dogs. Photo via Religion News Service.
I spent much of the day in my father’s room at the nursing home today. I got word that a doctor ordered a sonogram last night so I wanted to be there since the evening staff last night had, not surprisingly, zero idea why the test was ordered. Thankfully, the results (checking for internal bleeding) were negative.
Last week, in a flurry of work and neighborhood social activities (conferences, commencement, and a blogger meet-up), I missed four consecutive days of seeing my dad. I felt terrible about it (and enlisted my brothers to go the extra mile and visit more) but I’m not going to lie, I felt as if I could get a little bit more done in this thing we call regular life. I did a huge grocery shop, for instance. I washed my own clothes as opposed to sending it to the wash and dry. I concentrated a little more than usual on work. You know, the way I used to be. But at the back of my mind, I wondered if my dad noticed I wasn’t there, and hoped my mother was OK keeping up with it all, especially since, in recent weeks, she returned to her part-time job.
So I’ve gone three times since Sunday of this week and noticed my dad is uncomfortable. Again, the Parkinson’s, the fall and hip fracture, and surgeries, have eroded his ability to form words. Everything sounds like a light moan. So light, that I never worry about the nursing home staff getting annoyed with him; they can barely hear him!
But on Monday night, my brother, mother, and myself, could not figure out what he needed. The choices are limited: adjustment of his position on the bed? Ice/water in the mouth (because he has trouble swallowing, he cannot eat or drink)? Diaper change? Pain?
Many times, he does not (or will not?) respond ‘yes’ or ‘no.’ Sometimes, after a full half hour of throwing different options out there, he’ll say yes (or no) to something I asked the first time. It’s frustrating.
And it also has me wondering if our visits hurt him. Stay with me here: Whenever I get there, if he is NOT sleeping, he’s calm. Quiet. And then he sees me and start trying to speak. Trust me, I’ve thought about whether he’s trying to tell us he’s being mistreated, but my mom was there so much before she returned to work, and through observing how they treat other patients, that cannot be it.
(*This is not to say I haven’t seen the staff get a bit snippy, or flat out ignore some other patients. In fact, it is the vocal and sometimes, most able, ones who find themselves ignored. :/)
So, I’m left wondering if dementia has really set in. After my dad fell, the hospital staff, unable to understand him, classified him with mild dementia. “Confused” is the word I’d see in his chart. Obviously, I hastily disagreed: He knew where he was every second. It was they who were confused about what he was trying to say. Or, when feeling ill with pneumonia, he wouldn’t respond to them. This is also confusing!
But, now, I won’t deny that he may have some mild symptoms. After all, it is expected in patients who have had Parkinson’s for many years. He is coming up on 19 years with this tough disease.
We are not going to stop visiting him, of course. I just wish there was a way to allay him of whatever is causing discomfort. Most of all, I think, if I were a millionaire, I’d purchase some technology where I could just strap some wires to his temples and a machine would tell me what he is saying.
I’ve said this before — my dad is where I get my personality and I sure do miss talking to him about sports, music, and jokes.
I’m trying to be more on a schedule where I get my life somewhat back into a normal routine, by going every other day to see my dad at the nursing home, but it’s not working out so well. I get racked with guilt when I skip a day, and usually spend the next two or three days rushing there after work.
My dad is actually doing well. I mean, he’s not jumping out of bed and walking around, but he’s been without pneumonia or infections, and his sacral wound (bed sore) is coming around, albiet slowly.
My brother moved mountains (that’s just me saying it takes MOUNTAINS to get action at the nursing home) to get my father’s old primary care physician to check him out, instead the invisible doctor who has a contract with the nursing home. I’m glad he did. He found my dad to be anemic and said if he can’t get stronger, he’s not going to improve.
So that’s where we’re at. He ordered some changes and I continue to see my dad more awake these days. It’s crazy to think that, in February, and some of March, we really thought we were going to lose him. He was rarely awake and, at one point, had to be intubated.
Thanking our lucky stars, and also my mother’s friends from church, who keep visiting and praying for him at his bedside on a weekly basis.
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.Thanksgiving eve in 2011 (?) with my cousin, Maria, her husband, Gonzalo, and my brother, Richard.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!)Hanging out with my brother, Richard, and my dad, as usual!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 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.
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.
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