On providing comfort

Lutheran comfort dogs. Photo via Religion News Service.
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. :/

Today in things that shouldn’t be…

Screen shot 2015-05-06 at 9.50.54 PMJust the other day, a friend of mine posted a mini-rant on Facebook about men who, under the guise of saying “Good morning,” are really just trying to get you to engage in a conversation, and how, when she doesn’t return the greeting, or God forbid, smile, she, at times, gets a nasty response. The backlash on that particular morning? “At least you could smile, bitch.”

Yes, it goes without saying, not all men are this way. (Isn’t that common sense?) But this kind of thing happens far too much. And it sometimes feels (to me, anyway) that the backlash is much worse than the fake greeting/catcall/harassment, whatever the situation was.

Predictably, my friend was deluged with comments, many of which were of the #NotAllMen type, but a few were pretty mysogynistic:

“Well, you’re hot (she is), but women who aren’t should be thankful.”
“I really am saying good morning. What’ the harm in that?”
“Maybe if women didn’t walk around all stone-faced and just said ‘Good morning’ back,” and so on.

One guy even tried to say he greets strangers on the street equally. Yeah, ok!

Debate ensued.

But the following is an example of something that just SHOULDN’T BE:

Police are still searching for a man suspected of slashing a woman in a downtown Manhattan subway station over the weekend.

According to the NYPD, the incident occurred at 5:40 p.m. this past Saturday, May 2nd, at the Brooklyn Bridge/City Hall stop: “[The] suspect attempted to engage the victim, a 34-year-old female, in conversation. When the victim ignored the suspect, the suspect spat at the victim, who then began to laugh at the suspect. The suspect then took out a sharp instrument, slashed the victim in the arm and then fled the station.” (Read more on Gothamist.)

Imagine that: A violent response to being ignored by a woman who dared to ignore a man trying to engage her. This kind of shit shouldn’t happen. Maybe if more (#NotAll) men empathized, just put themselves in our ‘heels,’ and realized, sometimes, we just want to get where we’re going — quietly — we wouldn’t have to fluster your sensitive little feelings into a debate on Facebook. 🙂

Here are some other links that appropriately fit this headline:

A Nebraska woman who claims to be an ambassador for God and his son Jesus Christ is suing all gay people on Earth. (Daily News) — waste of court time, if you ask me!

In Chicago, it isn’t the cops who tortured who will dole out $100 million to victims. That’ll be the taxpayers. (Fusion) That’s a lot of taxpayer money. Now will people see why there is a problem with police brutality?

Cop bites man’s testicles on Cinco de Mayo. (Death and Taxes) What is there to say, really?

Pedro Martinez doesn’t hold grudges but …

Screen shot 2015-05-05 at 9.08.14 PMLord knows I’m no fan of Pedro Martinez or the Boston Red Sox, but I must say this NPR interview with the Dominican-born pitching great on All Things Considered has me seeing him in a different light.

Why? Although he says he doesn’t hold grudges, he says he’ll never tip his hat at Fenway Park again because they booed him once. WOMP. 😉

Martinez was on to promote his new memoir Pedro (Houghton Mifflin Harcourt, May 2015).

But seriously, he surprised me. He admits he’s a fan of Roger Clemens, and he also goes on to explain that haunting “Yankees ‘are my daddy'” comment. He chalks it up to a bad translation of a Dominican saying meaning someone has your number.

People from Barranquilla, Colombia, (where my parents are from) also have that saying, and it’s why the battle hymn for our local football team, Júnior de Barranquilla, is “Junior tu papá!” So it definitely translates, Pedro.

Anyway, listen to the interview below. He actually makes the team I disliked so much sound … fun? (Yep. I surprised myself.) And read an excerpt of it here via Sports Illustrated.

http://www.npr.org/player/embed/404483222/404483226

Missing days

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.

Screen shot 2015-05-05 at 8.50.19 PM

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.

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?

New hip-hop by Ratking, Nani Castle

Screen Shot 2015-03-12 at 12.34.29 PM
Still from Wikispeaks via YouTube.

I’ve been a super fan of New York City’s Ratking since stumbling upon a random blog post (Complex? Vice? Can’t remember.) that led me to XL Recordings, and the single, “646-704-2610,” last year. I was pretty enthralled with this video for “Wikispeaks” (featuring the spunky emcee, Wiki, who often refers to himself as a mutt– he’s half Puerto-Rican) because it just shows a bunch of kids walking through New York City while he spits fire:

“Damn I feel like Jay-Z in ’96
Man I feel like ODB in ’93
Am I even an ’04 Ye?”

Shortly thereafter, they released So It Goes (via Hot Charity) in 2014. There was just something REAL New York hip-hop kids about it. (Btw, if you haven’t heard “Remova Ya,” get on it, as it is the quintessential song about the NYPDs now defunct Stop-and-Frisk policy.)

“To the boys in blue
Never really liked you, rubbed me rude”

Well, they dropped some new tunes (!!!) via bit torrent this week. Grab 700 Fill here.

I like how So It Goes is described in the bundle: “an exhilarating and reckless lyrical portrait of a maybe-vanishing city; part Vonnegut, part Dipset, part Suicide.” Yeah, that’s putting it perfectly. Unlock the 700 Fill bundle to get 9 new tracks, instrumentals, and a short video from Ari Marcopoulos.

Speaking of young New Yorkers who rap, and are half Latino, Staten Island’s Nani Castle just dropped The Amethyst Tape. Thanks to Nati (conrazón) for putting me onto her.

Nani Castle
Nani Castle

Get to know more about the half Chilena, whose dad came to the States as an exile in the 70s, here via Remezcla. Warning: her stuff isn’t gentle and girly. It’s pretty POW!

“Welcome to my castle, Come into dungeon
Come inside, I wanna show you something.”

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.