On the holidays… and change

christmasChristmas will never be like it was when I was a little girl. This is a post about how it used to be, and how things have changed. Lots go through it, and now it’s our turn.

When I was little, we didn’t have much — I will never forget one Navidad in particular in which my dad gave my brothers and I $3.00 each in a white letter-sized envelope. I wasn’t sad about the lack of toys for gifts, but felt awfully embarrassed for my father and told him it was OK. But it was awkward. I recall vividly that he handed us those envelopes on our way out to visit with family. We stuffed our stash in our rooms and piled into the car. The holidays were here and we were going to have a good time as we knew how!

Christmas time was filled with a jolly (yeah, that word describes things perfectly) times with our small, yet close, family.

My tio Raul (my father’s older brother and without question the uncle I was closest to) and tia Yolanda were always a part of it, as were my (distant? Not really, try super close!) cousins, Maria and Susy, whose mother, Mari, was my tio Raul’s sister-in-law. My aunts on my mother’s side (Mirta, Nina, Chiqui), their children/my cousins, and my maternal grandmother (abuela Esmeria) would get visits from us, as well. Gifts weren’t aplenty, but food was cooked with love, Colombian music—courtesy of my dad’s record player—filled the living room, and good times were had.

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The only way we can see my abuela now is by flying to Miami.

As we grew older, most of the family moved away to warmer climates. My father was diagnosed with Parkinson’s in the late 1990s and things haven’t been quite the same every since. My maternal grandmother, now in Miami, would go on to develop Alzheimer’s, and later, my tio Raul, also in Florida, would find out he, too, had Parkinson’s.

Somewhere in there, I was married, then dealing with the spouse’s alcoholism. Then I was separated, and divorced. Throughout it all, there were no tears on my part, only would’ve, could’ve, should’ves. It’s like I lost my ability to feel.

Cousins got married, some moved away, and, as happens, life gets in the way. There are work and parenting commitments, as the next generation of children have to be raised, and so, not surprisingly, intimate family gatherings hardly take place.

Today, Dec. 23, marks four years since my tio Raul passed away due to Parkinson’s disease related complications. I got to see him at a nursing home a few months before he passed, and, honestly, I know he’s in a better place today. I miss him terribly, but Parkinson’s can be an awful disease. I say can be, because I acknowledge there are other illnesses that are much, much worse.

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My Tio Raul (left in L photo, center in R photo)

But Parkinson’s eventually imprisons one in their own body. It starts with nerves and muscles, but eventually takes your voice. I remember when I visited him, I could hardly hear him. I kept a happy face and joked around, as I always do, but it is awful to see. I didn’t want him to feel that way.

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The last time I saw my uncle in 2011. With my cousin Maria (L) and my tia Yolanda (R.)

Meanwhile, back home, my father was still as stable as the Deep Brain Stimulation surgery he had in 2006 could keep him. He hadn’t had the Parkinson’s tremors in a long while, but his voice and ability to speak were eroding, and rigidity was taking away his independence via walker. He became wheelchair-bound, but he was home for every holiday.

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Dad at two different Christmases.

However, this will be the first Christmas without him in the home while we have Christmas dinner, for instance. Here are some tips on how to cope with grief and loss throughout the holidays, courtesy of Fordham professor Lisa Cataldo.

“People think they’re supposed to be happy during the holidays. This is supposed to be a time of sharing with your family, of positive relationships, of celebration and joy,” Cataldo said. “Many people feel alienated, because they’re not in that space, and that idealized image of the holidays only makes them feel the lack of those things more acutely.”

 

Two thousand fifteen has been a tough one for our little clan. My father fell and broke his hip on Jan. 21, 2015, and was in and out of hospitals, knocking on death’s door at least three times through March. Since then, he’s been in a nursing home, and it’s not easy. Sure, it’s a facility that can serve his needs 24/7, but this comes with much advocacy from us. You have to be there to make sure he’s not neglected. Any sign of a temperature or low blood pressure can spell trouble. A very bad bed sore he developed in February is only now showing signs of progress. (This after I had a very honest discussion with one of his nurses, who said he’s probably go to the grave with that wound. It wasn’t harsh; just real.)

In late August, I had to put my best friend, my 14-year-old black lab mix, Skunky, down. A cancerous tumor forced me to put him down and I still can’t believe I live without a dog!

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Me and Skunky in Washington Heights.

Thanksgiving was sad, but no one talked about it. In addition to the fact that my older brother, wife, and nephew moved down to Orlando, the house was quiet. My mom and I visited my dad in the late afternoon/early evening. My younger brother stopped by as late as visiting hours would allow. Out by 8 p.m.

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Christmas 2014, my dad’s last one in his house!                                              With my nephew, RJ, and my mom, Maria. 

My younger brother’s girlfriend’s mom and brothers came over, which was nice, but it was very low-key. When the patriarch of the family isn’t around, and can’t even eat due to Parkinson’s related swallowing problems, it’s just sad.

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Happier times, despite the Parkinson’s.

To make things worse, we have not quite dealt with our feelings. In one of the bad hospital stays, where a very bad pneumonia caused ICU doctors to have to intubate him, and even insert an I.V. of antibiotics through his carotid artery, my mom and I cried a little, but something about our family of five prevents us from outwardly displaying our fears and general grief. Again, it’s like we’ve lost our ability to not be numb.

There are frequent spats between us, about who doesn’t visit, or visit enough, and the person who is doing the most, of course, is my mother. She is trying to live her life, joining a YMCA and attending classes, and doing better at not spending all day at the nursing home, which is draining.

It’s draining because my father tries to speak to us and we can’t understand him. It’s draining because there are so many residents who don’t get visitors and look to you for any little conversation. It’s draining because there’s a certain smell, a certain way the staff there is overworked and stressed, and, most of all, because we know he’ll be there for the rest of his life.

It’s also disheartening to recently read about nursing home employees sharing pictures of themselves mocking or abusing patients on social media. It just adds to my guilt that I need to be there more. Working in New York, living across the river in Jersey City, and having to drive further north to the home in which my dad now lives.

There’s a lot of wondering what life would be like had he not gotten sick, or remembering what he was like before he was diagnosed. It’s pointless, but it comes up in conversation a lot when we get visitors.

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With my brothers. I miss my sister-in-law (third from left), now in Florida.

I think a lot about possibly getting Parkinson’s myself. I dream vividly; I always have, but telling my mother about how it can signal Parkinson’s really upset her. But I’m just being realistic about the fact that it can very much be genetic. I spend a lot of the time at the gym because of this, since exercise has been shown to slow the progression of the disease, something we did not know when my dad was first diagnosed.

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My nephew, RJ, lives in Florida now, and I miss him so!

I was never really big on winter holidays. I always liked the Fourth of July and summer in general. I dislike the cold, the dark coming early, and having to stress out about gifts. But we’ll do it. Christmas will be fine, but figuring out how to be with my dad when the clock strikes midnight on Jan. 1 is another hurdle. (We’re not sure if visiting hours will be strictly enforced or whether we’ll disturb his three roommates.)

If I could have one wish for 2016, it’s that we deal with this better. It doesn’t seem like my younger brother and I have time for support groups or therapy with the full-time jobs and side gigs, and having to drive to visit mom and dad. But I’ll suggest it. We’ll see.

I am EMPHATICALLY grateful that my father is still with us. He doesn’t seem to be in pain many times, but as his nurses aide sometimes says when I’m in his room with her wonderful Haitian accent, “He seems miserable.” (I think it’s more aches that come with being bed-ridden most of the time.)

I pray 2016 brings us some better days.

Get me wheelchair, damnit!

Stock photos for nursing homes? Not a thing of joy.
Stock photos for nursing homes? Not a thing of joy.

Once again I find myself at a point in time when something has to be decided on regarding my dad’s care, and I’m still incredulous at the reality that he has to be cared for at a nursing home. At a nursing home!

As I’ve stated on this blog before, living in a home was a thing of the movies, or the soap operas I’d watch as a tween on summer vacation. You know, uber wealthy soap opera family puts grandma away so they can start planning how to get all of her money, stocks, and high-end art. It’s certainly not something our family would ever do. But here we are.

My father gets his nutrition (and Parkinson’s medication) through a peg tube. He receives nebulizer treatments three times a day. He is wearing a catheter because, as he is incontinent, urine could make the bed sore he has on his sacrum that much worse. Oh yeah, he’s wearing a vac machine to drain the wound. It’s a lot.

But it gets worse.

As physical therapy pointed out to us last week, the regimen they have for him isn’t showing any improvement. And then came the warning: insurance is going to cut this plan of care.

So now the social worker at the nursing home (review to come later; I’m not happy with several things about the culture there) is trying to find a long term care facility that will accept my dad’s health care insurance (an Aetna plan administered via the Medicare program. It’s not the best, but it’s something).

I asked physical therapy if there’s any way we can get a wheelchair so we can take my dad outside when the weather warms up. (This weekend, we’re supposed to get above 60-degree weather!) They stalled (as usual) with an excuse about having to order it. But the thing about this experience is that it has made me a major league demanding (yet nice; no yelling!) bitch when it comes to my dad’s care at that facility. So, it’s GOING to happen. I don’t care if I have to make 100 phone calls and knock on every single administrator’s door.

Wish me luck.

On nursing homes, family visits … and resentment

Screen shot 2015-03-17 at 11.07.18 PMI should be happy (?) that my father is OUT of the hospital and back into a subacute unit of a long-term facility, aka a nursing home. But this, his third round back, is more depressing for me. He sleeps more, interacts with us less, and it seems to get thinner by the minute. There’s no other way to say it — it feels like I’m losing him.

I’m also slightly, ok maybe definitely, losing my [was it ever normal?] mind. I’m angry. A lot. It doesn’t make me want to punch anyone; it makes me want to check out and stop speaking to everyone (except my parents.)

Life goes on and, more and more, it’s only my mother and I who visit and spend hours with my father (my mother more than all of us, as she has been forced to retire as a result of my dad’s fall and hip fracture.)

My brothers, both who have children, visit less and less. Two and three days go by and no visit. And I resent more and more. I have to be there every day. Throughout this whole ordeal, I’ve missed two days. I can’t see this going any other way for me.

I’m not going to lie; I’m pissed about their lack of devotion. I do not understand how you could not visit your father, the sole reason we were even born into this country, and became the people we are today. And checking in with my mother? Not so much.

Am I going crazy?

I actually met with a friend recently (something I hadn’t really done since my dad fell and became very ill) who also has a father in a nursing home. The situation is different. This person isn’t close to death, but immobile, and being in a nursing home is because the person’s spouse simply cannot handle the complicated care.

But this friend, one of five, told me that only one other sibling visits their father. “What can you do? You can’t get mad at it. And you can’t keep asking them to visit.” That’s true, I guess.

It’s hard to accept. I feel like I have anger, acid, or vomit, hanging at bay at the pit of my throat lately. I’m so disgusted. How can people be like this? Why are people like this? How dare they live their own lives? How dare they go out and have fun? Get a haircut even? Anything, all while my dad is stuck in a room. He can barely talk. He’ll probably never feel the outdoor air or direct sunlight again? How can you not just want to sit there with me!!! Aaaarrrrghhhh.

The anger and resentment affects so many other things. It’s like a bad domino effect. (Only I’m not reacting. As per usual, I’m bottling it all in.)

For instance, I posted a story on Facebook about a guy who walks 21-miles to and from work in the suburbs of Detroit every day because he doesn’t have a car. An old friend (Let’s go with acquaintance. If we were once friends in high school but haven’t spoken since then, don’t hang out in person, are we friends, really?) comments that the man is stupid for walking that far for a job that pays $10 per hour. -__-

I want to de-friend and block this person FOREVER. But not before insulting the person’s ignorance, of course.

A nurse’s aide at the nursing home gives me a look when I nicely ask her to do something. Nothing monumental. Just, oh, I DON’T KNOW, turning and positioning my father — something that should be done so he doesn’t develop another pneumonia and worsen his bed ulcer. She then s-l-o-w-l-y obliges. I want to throw a shoe at her.

A tourist slows down and then stops short in front of me when I’m on my power walk to work in the morning? Yeah. I lied. I maybe want to punch this person.

I need a break.

I know what I need to do is just live MY own life the way I want to (which is visiting my father as much as I can) and realize that maybe my brothers are experiencing my dad’s demise differently than I do. Maybe visiting is hard for them. Maybe.

But being angry about it, which I am not saying this blog post absolves me of, isn’t the way to go. I WILL TRY to let it go. I can’t promise I will, but at least it’s out here on the record, right?

On the passing of Colombian vallenato legend, Diomedes Diaz

Diomedes Diaz
Diomedes Diaz

I have an interesting relationship with Colombian vallenato music in that my Colombian-music loving self didn’t always love it. I recall my cousin Maria asking me why I didn’t love it at and me saying “it’s old people music.” Ha! (We joke now that she was — and still is– a romantic, and I was [and still am] a cynical cold hearted kid. Go figure.)

I often heard vallenato at parties growing up because it is somewhat of a somber music, in which the ‘grownups’ sat around, reminisced about their homeland, and had shots of aguardiente. At home, my dad preferred to play salsa and cumbia as he was always more of an upbeat music fan (like me!).

Like my father, I preferred to listen to salsa and cumbia, and later champeta, but I gained an appreciation for vallenato as a young adult when I really started paying attention to the lyrics. So sentimental!

The music has its roots in Colombia’s pastures of Valledupar.

This form of music originated from farmers who, keeping a tradition of Spanish minstrels (Juglares in Spanish), mixed also with the West African-inherited tradition of griots (African version of juglar), who used to travel through the region with their cattle in search of pastures or to sell them in cattle fairs. Because they traveled from town to town and the region lacked rapid communications, these farmers served as bearers of news for families living in other towns or villages. Their only form of entertainment during these trips was singing and playing guitars or indigenous gaita flutes, known as kuisis in the Kogi language, and their form of transmitting their news was by singing their messages. (Source.)

Known as “el cacique (native chief),” Diaz was regarded as one of the best singer-songwriters of vallenato. But he didn’t come without controversy:

Diaz led a tempestuous life, serving time in jail over the death of a fan at a party in his home. He often showed up late to concerts or not at all, something his fans put down to his addiction to drugs and alcohol.

In 1997, at the height of his career and shortly before the launch of his album Mi Biografia (My Biography), a fan and friend of Diaz, Doris Adriana Nino, was found dead by the side of a highway in Tunja province. Forensic experts at first said that she had died of a heart attack following a drug overdose at a party hosted by Diaz, but a later forensic report suggested she had been suffocated.

After a lengthy trial, Diaz was sentenced to 12 years in jail for homicide, a sentence which was later reduced to six years.

Diaz, who had been put under house arrest, went on the run when he was due to be transferred to jail, allegedly hiding away in an area controlled by the infamous paramilitary leader known as Jorge 40. He handed himself in to the authorities in 2002 and, after having his sentence further reduced, was released in 2004. (Source.)

Much like when tropical music king Joe Arroyo died in 2011, Colombians have taken to the streets to pay homage to Diaz. And Valledupar’s mayor has declared four days of mourning.

Radio stations are playing songs from his vast discography nonstop.

There are several favorites of Diaz I love, but I’ll leave you with “Mensaje de Navidad” since it’s appropriate for the Christmas season:

Again, the lyrics are somber, but true, as the holidays aren’t always “joyous” if one is away from loved ones.

Unos dicen: Que buena las navidades
Es la época más linda de los años
Pero hay otros que no quieren acordarse
De la fiesta de Año Nuevo y aguinaldo
Pero hay otros que no quieren acordarse
De la fiesta de Año Nuevo y aguinaldo

(Source: see rest of lyrics here.)

Making Movies’ ‘Tormenta’ one of KCUR’s “Best Songs” of 2013

Downloads of this album benefits three Kansas City-area charities.
Downloads of this album benefits three Kansas City-area charities.

A special version of “Tormenta,” by Making Movies, (available on a ’12 Days of Christmas’ album benefiting three Kansas City-area charities via the Midwest Music Foundation & Boulevard Brewing Companyhttp://bit.ly/1ju1hf0) is one of KCUR 89.3 FM‘s ‘Best Songs from Kansas City-area Bands in 2013.’ The song is about missing home at the holidays and was written specifically for the immigration cause.

Hear KCUR‘s other picks here –> http://bit.ly/JQx7Tn (Scroll to 38:25 to hear the special version of “Tormenta.” It is very folkloric version.)

Hear the original version of “Tormenta” here via MTVhttp://on.mtv.com/JTk2bW

A still from the music video for "Tormenta." Watch here: http://youtu.be/QYm5RjCLUfs
A still from the music video for “Tormenta.” Watch here: http://youtu.be/QYm5RjCLUfs

The band is now bound for Texas. Follow the rest of their tour here, and check out this video from the last time they played the Lone Star state. (Video by the Houston-based Sinister Kid Studios.)

National Suicide Prevention Week

Suicide_preventionIt’s National Suicide Prevention Week and National Suicide Awareness Day was on Sept. 10, 2013. This Saturday, Sept. 14, the radio show, Fordham Conversations, will feature a discussion about males and suicide.

Fordham University Professor Daniel Coleman discusses his research, which examines gender stereotypes and the link between masculinity and mental health.

“It’s not a very widely known fact that 80 percent of suicide deaths in the United States are men,” Coleman told Inside Fordham in February. “So the cutting edge in suicide research now is to understand why there is this gender discrepancy.”

Read the full story about his research here.

Jarrod Hindman, director of the Colorado Office of Suicide Prevention, talks about the “Man Therapy” mental health and suicide prevention campaign.

You can hear Fordham Conversation’s every Saturday at 7am on 90.7 WFUV or at www.wfuv.org.

You can listen to the show on WFUV’s News Page on Saturday beginning at 7am http://www.wfuv.org/fordhamconversations

#Immigration rally in D.C. today

In honor of the tens of thousands of people who continue to arrive in the nation’s capital for a rally on immigrant rights today, watch the video for “Tormenta,” a song dedicated to immigrant families by Kansas City bilingual rockers, Making Movies.

The song and music video, released in 2010, shows touching images of immigrant life in Kansas City, a metropolitan area whose immigrant population doubled in the 1990s and continues to grow.

The song’s lyrics display the struggle immigrants face as they migrate to the United States for better opportunity, yet the same time, long for loved ones at home (see lyrics below.)

Making Movies continues the “A La Deriva” tour this week with stops in Dallas, Austin, San Antonio, and Houston. Dates here.

Lyrics:

Tormenta by Making Movies

Yo quiero ver mi familia esta Navidad,
Y quiero hablar con mi abuelo, oír la verdad.
Porque el frio me atormenta,
El frio me atormenta,
El frio me atormenta,
El frio me atormenta.

Yo quiero ver mi país esta Navidad,
Y quiero bailar en mi pueblo otra vez más,
Porque el frio me atormenta,
El frio me atormenta,
El frio me atormenta,
El frio me atormenta.

Coro:
¡No quiero estar perdido!
¡No quiero estar perdido!
¡No quiero estar perdido!
¡No quiero estar perdido!

Yo quiero comer de tu boca la mera verdad.
Porque el frio me atormenta,
El frio me atormenta,
El frio me atormenta,
El frio me atormenta.

Coro:
¡No quiero estar perdido!
¡No quiero estar perdido!
¡No quiero estar perdido!
¡No quiero estar perdido!

Yo quiero saber que va pasar contigo,
¡Déjame saber si voy a estar perdido!
¡Yo quiero crecer, cambiar este sonido!
El frio me atormenta,
El frio me atormenta.