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.

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