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.

My dog is dying.

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Skunky & I went on a long, 2.5 hour walk the other day. Yes, I brought water with us. He’s not the quick walker he once was, but I think he enjoyed walking along the Hudson River from the other side. Some of his best years were spent walking along the Hudson from the Washington Heights/Harlem side.

My dog is ill. He is dying, and I think it might be time to let him go.

Last month, when I found out the tumor on the roof of Skunky’s mouth was malignant (with hemangiosarcoma, a cancer that most often affects dogs), I felt numb to the news, in part, because, aside from being a little less active (he is 14, after all), he seemed fine. He was still eating normally and happy as ever to get out of the house and go for a walk.

The vet, who told me he would advise his own mother against putting the dog through chemo, radiation, or cryosurgery, told me to spoil him rotten, make him comfortable, and to monitor his quality of life as I’d know when it was time to let him go.

As a kid, if a horse or dog had to be put down in a book I was reading or a movie I watched, I never understood it. Why couldn’t the doctor patch them up?

But in the vet’s office that day, I recalled a time when I took Skunky to Inwood Hill Park when we lived in northern Manhattan some years ago. It was late fall, an absolute beautiful time in that park, and during our walk, we passed by a man wheeling his German Shepherd-mix around the trail on a dolly as, presumably, his elderly dog could no longer walk. That was no life for the animal, I thought to myself. That’s selfish. That’s keeping the dog around for the owner, and I won’t ever do that, I thought.

And now, I find myself at that fork in the road. Yesterday, one side of his snout began to swell. Again, he is still eating and will go on a walk, but the swelling looks pretty bad. And he knows that I know something is up. When I look at him, or pet him gently, he starts to wag and gives me that look of shame he so often gave me as a pup if he thought he did something wrong.

I think it’s time to have him put to sleep. I know I will miss how he greets me when I get in. I will miss his extreme loyalty that ensures he never leaves my side. He’s part of the family, and that’s why my mom, brother, brother’s girlfriend, and the other pet living in the house (a shorkie!), don’t seem quite ready for him to go.  (This is partly why I feel guilty about having to make this decision.)

I spoke with a colleague about this a few weeks ago, as he worked at a veterinary technician many years ago, and he said, more often than not, owners wait too long. It’s not like a pet can tell us if they’re really suffering, right? He assured me the dog wouldn’t feel a thing when being euthanized. That gave me some comfort.

But it’s still tough.

You see, this is happening at a time when my own father is nearing the end of his life. A very strong man who never had any health problems aside from his Parkinson’s disease, he’s been living in a nursing home for the past seven months. My father is not suffering, per se, but I wouldn’t say he has a great quality of life.

He is incontinent. His limbs are contracting. He is fed through a peg tube. He relies on nurse’s aides to reposition him every two hours. His ability to speak is pretty much gone. He does attempt to let us know when he is in pain. Sometimes, it’s not that, but it’s tough to understand what he is trying to tell us.

The best we can all do is make sure he’s as comfortable as possible. I thank the staff at the nursing home for doing that as best they can.

In many ways, it feels like he is already gone. I always loved talking to my father (he’s a very jovial and funny man) and I haven’t been able to do that in a long while. But, he’s not gone, and this is why 2015 has been a limbo year for me. I am constantly waiting for a shoe to drop. I cannot, I will not, enjoy myself. Being social is the last thing on my mind because it doesn’t feel right.

I control that, and I know I can make a better effort to “live my life” while my dad is at the nursing home, and while Skunky lives his last doggie days. But right now, I can’t seem to find my footing.

All hands on deck, but not really

Screen shot 2015-06-14 at 11.31.48 PMThis weekend was supposed to have been an all-hands on deck situation.

I surprised my mother with a trip to Miami to visit her mother last month, and the trip was this weekend. I had to surprise her because had I waited for her blessing to buy the airline ticket, it would have never happened. Her mother — my grandmother — is 97, and has suffered from Alzheimer’s for many years, and last month, after a stroke, doctors told my aunt — her caregiver — to start planning for end-of-life.

Somehow my grandmother got better, though she is now living in a nursing home, but I still thought my mom should go see her. It had been two years, because, as I’ve explained before, she is my father’s caretaker (Parkinson’s.)

So, of course, my mom’s main concern is who would be there to visit my dad in the nursing home in her absence. That the man is confined to a bed is bad enough; that the bed is not in his own home is the part that we struggle with on a daily basis. Of course, I imagined it would be me, but asked my brothers to support, which I assumed they’d do. I told them they didn’t need to stay there for hours but just drop in.

They didn’t. I had to beg one to go today, and still went to visit him myself later, of course. I can’t not go, and that part is fine.

I am constantly reading up about how to deal with change, or deal with anger when situations are out of your control. I know I have to just deal with it, but it still sucks.

It wasn’t just about visiting my dad. I noticed my mother was low on basic essentials she needed in the house. It’s not a money thing; it’s a time thing, so I did one massive grocery shop. I did absolutely nothing social this weekend (unlike them) and that part is fine, but it still sucks.

Can’t We Talk About Something More Pleasant? (When our parents age)

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Excerpt from “Can’t We Talk About Something More Pleasant?” by Roz Chast of the New Yorker.

“I was just talking to somebody yesterday who said the worst thing for a parent is to have a child who’s a writer.”New Yorker cartoonist, Roz Chast.

I would like to write about my parents.

I wrote a couple of columns about my father’s Parkinson’s when I was a newspaper reporter for the Home News Tribune, and I’ve blogged about his illness on this blog once or twice. But I would like to someday write stories about them, their childhoods, and especially, how my dad was pre-Parkinson’s.

And as for my mother, that’s more complicated.

I’ve never been the super close daughter (the type to talk about every single detail with her mom) that she was with her mother. (My grandmother is still alive, but she has Alzheimer’s, which means my mother has lost, in essence, her best friend.) Add in the fact that she is stressed because she’s my father’s full-time caregiver, and it’s even more complicated.

Thankfully, our relationship is a bit better (much less bickering) since I’ve lived on my own (after a separation and subsequent divorce that she didn’t agree with at first) but, like all things, it could be better.

I have some things to work out, or talk about (?), in order to make that happen. And then I hope to write about them more, especially my mother, since she’s not very open about her feelings (hey, maybe we are alike, after all!) because as the most hardworking immigrants I know, my parents have some interesting stories that deserve some pixels on the Internet.

Now back to cartoonist Roz Chast. I learned about her latest work via a wonderful interview on “All Things Considered” on WNYC:

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Roz Chast

“The longtime New Yorker cartoonist is an only child and became the sole caretaker for her parents, George and Elizabeth Chast, when they reached old age. In her new, illustrated memoir — Can’t We Talk About Something More Pleasant? (Bloomsbury USA, 2014) — Chast mixes the humor with the heartache. It’s about the last years of her parents’ lives and her relationship with them as their child and conflicted caretaker.

“They never had what’s known these days as ‘The Talk’ — an acknowledgement that their deaths were inevitable. As a result, Chast says, everyone was in denial and actively avoided the subject, even as it was staring them squarely in the face.”

“Chast’s parents — who were both born in 1912 — lived independently in Brooklyn up until their early 90s. Things started to go downhill in 2005 when her mother fell off a step stool at age 93. ‘She was in bed for a few days, and it was clear that what was going on was more than the fall off the ladder,’ Chast recalls. ‘That was the beginning of their sort of slide into the next part of old age — you know, the last chapters.'”

My parents are in their late 60s, early 70s. I can’t imagine it getting to this point Chast describes, but I guess my brothers and I should prepare ourselves sooner rather than later. And today, after reading this story in The New York Times, about a man who is 111 years old, I agree wholeheartedly with Chast:

“When people talk about extending the human lifespan to 120 it bothers Roz Chast. ‘That upsets me for a lot of reasons,’ she tells NPR’s Melissa Block. ‘I feel like these are people who don’t really know anybody over 95.’ The reality of old age, she says, is that ‘people are not in good shape, and everything is falling apart.'”

Though my parents aren’t in their 90s, my father has a chronic disease that renders him pretty immobile, and so, I too, can’t imagine wanting to live to 111. (God bless this man who has, though!)

Listen to the entire interview with Roz Chast here, and read an excerpt from her illustrated memoir via The New Yorker.