The Beginning of Grief

I read in a recent post, in a Facebook Group for Alzheimer's caregivers, that an Alzheimer's family watches a person diagnosed with this awful disease die twice.  When the one they love is first diagnosed with Alzheimer's and then in the end when that person takes their last breath.

I would agree with that, but would also add, when they forget you, and when they forget who they are.  When they forget their grandchildren, their spouse and many more moments like this.

It has been two months since mom took her last breath and finally was no longer dealing with her terminal disease.  Mom's passing brought back memories of when her journey, as well as ours, took the wrong turn down this long, one way, incredibly dark road.  When we actually began to grieve.

In the past year and a half, our family has endured lots of losses.  Many opportunities for grief and to really understand all of the various ways a person can grieve. Our grief with mom was as long and painful as the days we had with her, tending to her every need.   We absolutely had shining moments with her during this time but were reminded daily about how horrible this disease is and how much it devastated her and our family.

I remember when we first started to notice mom forgetting things.  At first it was subtle things, like how to say something or where she put things like her purse.  Then it was her admission that something was wrong saying "yo no se lo que me pasa.  Se me estas olvidando las cosas." (I don't know what is happening to me.  I am forgetting things.)

My sisters, wife and I suspected something was not right and we would text each other to keep a closer look at her and to let everyone know if we noticed her getting worse.

About a year later, in September 2008, mom and dad were involved in a car accident, that truthfully, they should have not survived from.  There was definitely a guardian angel looking out for them.

They were in their Ford Explorer, crossing a major intersection, when dad misjudged the tractor trailer passing by and clipped the back end of the trailer with his front end as he made a left turn onto the highway.  They were caught and the car flipped, turned, rolled over and over into a ditch.  My mom who had been buckled in the front seat was found in the backseat.  Both of my parents were knocked unconscious and luckily for them, my dad had my business card in his wallet.  The officer took the card and called me.  I did not recognize the number but answered it and when he asked if I was Rafy, I knew something was wrong.

They spent the night in the hospital, both with concussions and other bruises for observation.  A few weeks later, we decided to have mom checked by a neurologist.  It was then that it was confirmed that mom was in the beginning stages of Alzheimer's.  Mom had just turned 66 years old and that was the first day we started to grieve about losing mom.  The news was devastating and all we could do was cry.

We had seen The Notebook, other movies, and knew about the disease in passing but did not know what was really about to transform or should I say consume and at times, overwhelm, our family.
Luisa was distraught and continued to tell me she was sorry, while my mind was beginning to think about what was going to happen next, how to prepare for the coming storm, but also what Alzheimer's really meant.

I immersed myself online, ordering videos and books as well as joined the local Alzheimer's support group at the local library.  Initially, I would go by myself or with Luisa, but eventually decided that I would have to take Dad with me.  He was in denial and we really needed him to be on board and to understand what was going to affect mom.  Even that this early stage, it was very common to hear him tell mom "Angelita, I just finished telling you that. What's wrong with you? Did you not pay attention?"

At the Alzheimer's meeting, I learned about an Alzheimer's/memory research effort at the Medical University of SC in Charleston.  Roughly a 3-hour drive from home.  I made an arrangement for us to head down there and visit for an initial consultation.  Mom was nervous, partially about the long drive but also because of the battery of questions they asked her, such as who is the President, when was her birthday, what day was it, what was her husband's name...etc.  They told us they would get back to us after they analyzed the results of the exam but wanted us to come back a few days later.

We went down there the second time hopeful that they would be able to accept her into a medical trial to help fix the problem.  Once again they did another analysis of her, asking her more questions and stressing her out, unintentionally.  We discussed what trials they had in place, how the research trials work and that is when we found out that there was no guarantee that she would actually get any real medication but could be given a placebo.  After all, they needed to do A/B comparisons to see if the treatments actually worked.  They also shared with us the risks of the medication if indeed she got some, that could have very serious side effects.

I immediately flashed back to a conversation with one of the other couples I met at the Alzheimer's support meeting, that was participating in one of these trials, that the brain of the patient dealing with Alzheimer's had started to swell up due to one of those "side effects".  They ended up having to pause the trial due to this but were going to go back later to try to participate in another trial.

On my way home, all I could hear was mom saying how she did not like going there because they stressed her out with all of the questions.  I remember the traffic being horrible, and it taking almost 4 hours to get home.  We would be expected to make that trip twice a week, every week, with no guarantees mom would get the medicine, would always be put through the battery of tests, would travel about 7 hours round trip, and the risk of having a side effect that could be worse than the journey we were about to face.  Even though we did not truly understand at the time what "that journey" was.

I dropped my parents off at their house and drove home crying all of the way to the point that I almost had to pull over because I could not see from the tears rushing from my eyes.  Wondering what I should do.  How could I put mom through what I just described?  But also, how could I not at least try everything I could control, to help her.  To not try it would be to admit that I would be breaking the promise I made to her that I would take care of her.  That decision was the worst one I have had to ever do in my life and to this day, have not felt grief as much as I did that day.  That is when I came to the realization that my mom was dying and I was helpless to help her.  I called my sisters and said we could not do this.  They all agreed.  I don't believe I slept that night.

Weeks later after the numbness of this decision wore off, though the guilt never does, my attitude towards the road we faced changed.  Our new goal was to make mom our first priority.  To enjoy every moment we had with her. To record every moment we could.  To make laughter our first medicine, along with understanding what medical care we could give her to slow down this disease and most of all, give us more time with her.

That is, until we got the news that dad was diagnosed with cancer in 2011.

Two months today when our grief over mom changed.  1 year, 3 months, 10 days since dad took his last breath.  I miss you both.

Habichuelas Blancas - The Circle of Life

Growing up in a Puerto Rican household I used to always say that Puerto Ricans have as many flavors of beans as Baskin Robins has of ice cream.  The staple Puerto Rican diet consisted of Rice and Beans with a side of meat, be it pork, beef, chicken, cod fish... whatever.  There was a different kind of bean to complement the white or yellow rice and the meat we would have.

The NY Times in a March 1985 article entitled, Puerto Rico's Quite Edge, had this quote: "The delights of lunch, for $6 or $7, on some of the hotel's Puerto Rican specialties - say, onion steak with rice and beans and plantains, followed by a siesta in a hammock on the terrace overlooking the forest - is one reason people who visit Puerto Rico's west keep coming back."

I remember the garden my dad had, where he would grow tomatoes and beans.  Don't remember much else he grew but I am sure there were other things as well.

When I was young, our family went on vacation to Puerto Rico and we happened to be there during the time that the beans were ready to be picked.  I remember sitting on my uncle's porch with my uncle, aunt, parents and cousins helping them peel the beans that had been freshly picked.

It was a tradition that probably goes back hundreds of years there and was common in my house in NJ every year.

Several years after my parents moved down, my dad started growing his garden in the back of his house.  He started with the tradition of tomatoes but quickly figured out that it was way too hot in his back yard with the sun beating down on it from sunrise to sunset.

During one summer, my dad's brother, Tio Confy, came to visit us from Jayuya.  He brought some white beans with him from Puerto Rico and gave them to my dad.  My dad placed the beans in the refrigerator so he can keep them fresh, though dry, with a plan to plant them in his garden the following spring.

Dad planted those beans and low and behold, they took to the sun and produced a fantastic crop.

The pattern repeated itself every year, producing enough beans for dad to share with all of us.  He would also make some great meals with the white beans that he had grown.  Facebook reminded my wife Luisa yesterday, July 1st, of one of those great moments in time. 

In April of 2018, when my dad passed away, we found several bags of beans all neatly separated in the freezer.  5 bags to be exact.  We gave one bag to each family member (my 3 sisters and I) to make a meal in memory of dad.  I also gave one to our cousin Manuel, Tio Confy's son, for him to take home and remember our father with.  After all, it was his father's beans that started that annual event here in SC.

I also found a bag of dried beans along with bags of corn, pumpkins and squash in the refrigerator. All from Tio Confy and the ones dad used to plant his garden every year.

This year, my sisters and I all repeated the tradition in our own respective gardens.

Yesterday, July 1st, 2019, I picked my first beans that I had ever grown.  I've been thinking about the beans for about a month now.  How will I know when they are ready to pick?  Have we given them enough time, for them to mature and not end up with string beans?

I got my answer from Dad in Luisa's post. Exactly 2 years to the day, Dad's post was telling me it is time to pick the beans.  They're ready.

 

When I was a teenager I got sick and tired of eating rice and beans everyday to the point that I complained to my dad, why do we always have to have rice and beans.  Why couldn't we be like the other families and have Pizza, Spaghetti, Chinese food and other stuff.  My dad said because we are Puerto Rican and we have Rice and Beans.  That's our food.

Life is a circle that can repeat itself if we want to.  It is symbol of our traditions, our values, our culture, and our identity.  But just like the beans, we have to plant, water and nurture them to continue those precious traditions.

Thank you Dad for the wonderful tradition, for the memories, for the beans and most of all, for giving us the signal that they were ready to be picked.  Today marks 15 months since you took your last breath.  I miss you.

Reflections of a Father - My Brother-In-Law

Leading up to Father's day, I can't stop but thinking about what kind of Father I am, or at least try to be, and how I got here.  Especially in the past 1.5 years since losing what I was blessed with, and  what I could call, the "Holy Trinity" of Fathers.  My Dad (Rafa), My Father-In-Law (Humberto), and My Brother-In-Law (Miguel).  Each one deserving of a separate tribute to who they were and how they impacted me to become who I am.

My Brother-In-Law.

Miguel was much more to me than just my Brother-In-Law.  Having known him for 38 years of my life, roughly just a year older than I, he was my brother from another mother.  It was amazing how similar we were in all of our views, our priorities and character.

While it may seem strange to the average person why I would specifically choose someone that was more of a brother to me than an uncle in helping me become a better father, my view of becoming a better father was of watching how Miguel was as a son to his own parents, but especially the special relationship he had with his father and grandfather.  Yes he was an amazing father to his three daughters, an incredible grandfather to his grandson Jonathan and I am sure he would been the same for Liam as well.  To my boys, he was an amazing uncle.  But as a son, it was cool to see how he was with his father.

One of the first things I remember when Luisa and I started dating was catching him wrestling with his father on the sofa.  Within minutes, a loud crash could be heard when both ended up on the floor and they continued to horse around, much to the chagrin of Martha yelling "Stop it! Someone is going to get hurt".   At which both would be cracking up.  I was 16 at the time and that left quite an impression on me as I had never seen or experienced that level of horseplay before.

When Miguel would walk into the house or leave, he would hug and kiss his father and it was reciprocated by him.  It was at that moment that I realized that I wanted the same thing between my own father and I.  With Miguel though, it was usually followed up with a little tap on the cheek with his hand, followed at times with "comemierda" and a laugh.

He had a joyous approach to how he showed his affection with his father and grandfather, but he was a pain in the neck with them also.  The constant badgering and pulling of the strings was at times, close to going overboard.  And was it constant.  He was relentless in how much he was jodiendo with them that many times it ended up with his father saying "Pipe, no joda mas!".

But through his efforts, he was able to push them into submission on what he wanted and they would then end up enjoying what he was trying to get them to do in the first place.

For example, one time, Miguel wanted his grandfather (Mipo) to go with us on a several hour trip to see the dog races in southern Florida.  Mipo was not interested in having any of it.  He was having trouble walking and required a wheelchair to get around.  He just wanted to stay home and didn't want to be bothered.  Miguel persisted and persisted until Mipo relented and went with us on the trip.

On the way back, and for the next several years, we would ask Mipo what was the name of the mechanical rabbit that was being chased by greyhounds and he would reply "Here Comes Sparky" and would laugh remembering the good time he had.

It seemed like from that point on, Miguel would visit his grandparents house and immediately get the wheel chair ready to walk his grandfather around the block and Mipo would just go, knowing that he really did not have another option.

His love of life was forced onto everyone, especially his father and he truly had no say in the matter. He was better off because of it as well.

Miguel picked up many of the same habits and customs that he had learned from his father.  Including the parties that he would throw to welcome the New Year.  Miguel and Denise's house was the place to be for that event and nobody would want to miss it.  However Miguel had to throw in a twist every year.  One year we all wore suits, decked out from head to toe.  The next year it was all white.  The following year, we're scrambling to find the best bow tie for the theme that year.  We all put up with his shenanigans because, hey, it was Miguel being Miguel.  And that's who he was.

While most of it was done in jest, the one that stands out was when he made a toast, it would almost always be "To Me" and everybody would crack up.  I copied that in bringing in cakes to my mom on our birthday, opening the door and singing "Happy Birthday to You and Me...".

As an Uncle, he built a relationship with my sons that at times, I have struggled to replicate with my own nephews in some respect.

With Dan, Miguel always treated him with respect and like an adult, ever since he was a little boy.  He saw that about him from beginning and I recall him being tender and kind with him all his life.  When Dan would act up, he would pull him aside and explain to him what he was doing wrong and how he expected him to understand that.  I saw that same tenderness and demeanor with Jonathan and it reminded me of those times with Dan.  The patience he had was inspiring.

Nick was extra special because he was born on Miguel's birthday and from that day on, not only was it the best day of the year, according to Miguel, but it was the "bestest" day of the year, because Nick shared it as well.  Nick also shared his dancing skills.  That's another topic for another post.

Miguel would ask Nick questions like "what is new, what are you up to, how is this and that" and he would genuinely listen, no matter which path the conversation would take.  Nick would be describing some, way out idea he had as part of "a plan".  I would be face palming with my hands during this.  He would then conclude it with an emphatic "All Right, Good Job, Way to go, Absolutely!" like it was the best thing he had ever heard.  To me I would be like, "Miguel, why are you encouraging him to do that?".

To his sister Luisa though, he was one of a kind.  I was honored to witness that true love of a sibling and not the uncomfortable one that many siblings have.  The videos, voice messages, text messages and just the desire to be in touch with each other grew over time, especially when Miguel started to get sick.  But it was clear that this bond was beyond ordinary and one that all siblings should strive to replicate and have.

Miguel demonstrated in his way that by being an amazing son, grandson and brother, you become an amazing father.  One that becomes a role model for other young men to aspire to and older men to respect and mimic.  That was Miguel and from whom I learned so much.

The thought of not having any of my 3 father figures to reach out to anymore causes a sharp pain in my throat and my eyes to fill up every time.  Even as I write this and think about how truly lucky and blessed I am for having been exposed to all of this first hand, I can't help but have profound sadness that this is to be no more.

Thank you Miguel for being my older brother and showing me a different way, the better way, of being a son, an uncle, and a brother to help me become the father that I am.  Life is too short to be serious and you need to leave your mark.

Reflections of a Father - My Father-In-Law

Leading up to Father's day, I can't stop but thinking about what kind of Father I am, or at least try to be, and how I got here.  Especially in the past 1.5 years since losing what I was blessed with, and  what I could call, the "Holy Trinity" of Fathers.  My Dad (Rafa), My Father-In-Law (Humberto), and My Brother-In-Law (Miguel).  Each one deserving of a separate tribute to who they were and how they impacted me to become who I am.

My Father-In-Law.

I first met Miguel Humberto shortly after starting to date Luisa in 1980.  I actually think I met him before that and knew of him but did not really know him until we started dating.  My first real recollection of him was when I went to Luisa's parents house one day and we were sitting on the floor, up stairs in the family (TV room), watching TV, just talking with her mom.  Suddenly I heard a noise, the door open and close, and then footsteps downstairs as her father started to walk through the house to come upstairs.

Luisa and I were embraced in our arms, sitting on the floor, talking with her mother and watching TV when I heard the sounds.  Within seconds of hearing this, I jumped into the air and quickly sat on the sofa, trying to show respect when Luisa and her mother started laughing at me while I hushed them to not embarrass me.  I was so concerned about my first impression and was not interested in him coming in and seeing this creep with his arms around his only daughter.

When he came upstairs, I stood up, extended my hand and shook his.  Needless to say, he asked what they were laughing about and proceeded to embarrass me anyhow by telling him what had just happened.  And that was how they welcomed me into the family.

Almost immediately I saw that it was very different than what I was familiar with.  My first time to a nice restaurant (not McDonald's or the local Chinese restaurant), was with Humberto and his family.  I was quickly embraced as part of their family and the 8 of us, which included Luisa's grandparents, Miguel and his girlfriend Denise would go out every Sunday after church to a nice restaurant to celebrate as a family.  I found myself over there almost every day, not because of the food, though I ate everything I was provided, but because he made me feel at home, like I was one of them.  And had been all along.   It was there that we also learned the value of "family style" Chinese food.  He would buy a bunch of food and share it so that all of us could taste everything.

Because I would always be hanging out there, over time he grew to treat me like a son. Much to the chagrin of his son, Miguel.  Miguel was not so much jealous, but there definitely was a little competitive streak in him that kicked in because I was doing more and more with Humberto.  Miguel was a very finicky eater whereas my pallete was much more adventurous.   I tried everything and that was something that Humberto really appreciated.  Early on, Miguel started to make certain comments, of which his most famous was, "Ralphie, Until you do, I don't".  Humberto and Martha did not like that at all, especially when Luisa made a real stink about it, that he got reprimanded by his parents.

Humberto had a bar in the dining room, that was THE party place.  Every weekend, we would hang out there, listening to music from his amazing record collection, or jokes from one of the 26 Alvarez Guedez albums he had, while we had a drink.  From there, it would lead to dancing in the dining room with all of us, once a great song, like La Murga would come on.  It was amazing to do this every weekend, be together, enjoying each other's company, laughing with and at each other, and really just enjoying life.  That was the thing that amazed me of Humberto.  He lived life for today and not tomorrow.  He worked hard and everything he made, he spent on partying, going out to restaurants, going to Texas to be with his brother around the holidays and just living life to the fullest.  The bar and his house were so revered that almost all of his other friends, including myself, ended up making sure we added a bar to our own places with a party room.  Especially around the holidays, that music was blasting till 1 or 2 in the morning, or at least until the cops came to say that the music was too loud, which did happen at times!

From the beginning, Humberto would call me "Mi hijo", even way before I married Luisa.  It was natural to him to think I was his other son, even if I did come from another set of parents.  There were times that I would reach out to him to talk about the relationship I had with my own father and the frustration I was feeling because we could not connect at a certain level.  I was envious about the relationship he had with his son that I wanted to have a similar one between my dad and I.

When Luisa and I got engaged, he immediately went to his bar and open up a bottle of champagne for us to celebrate even though he did so with tears in his eyes.  Part of it due to his happiness for us but the other part because his precious daughter was taking her next step with me.  She was of course, the quintessential Daddy's girl.  He offered to either pay for a lavish wedding or to give us what he was planning on spending in cash so we can buy a house.  We chose the wedding. The funny part was that after the wedding, Humberto had reserved another place for an after party, with pretty much all of the guests that came to our wedding, to attend so that they can continue partying and celebrating our wedding.  Without us of course.  He had even hired my cousin so he could be the DJ.

A few years after Luisa and I got married, we had saved up everything we could to buy our first house.  We also did it while she was pregnant with our first born, Dan.  What should have been one of the happiest times in my life, was also one of the most depressing and painful because it was so expensive buying our first home and putting everything into it, as well as the expense of having a new child who was born two weeks after we closed and moved into our house, that we could not afford to get our first Christmas Tree.  It cost $35 and that was more than we had in our account, even though both of us had full time jobs.  I cried so much because I felt like I failed and when I told him, his response was to immediately to get in his van, go to the tree farm, while he proceeded to buy our first tree.

Over the years our relationship got even closer.  He never treated me any different than his own son, including insulting me just like he insulted his own son with special phrases that others would find offensive, but it was his manner of bonding.  If I had a nickel for every time he called me "You bitch" or "Mira Pendejo", I could retire.  But most of the times, he would affectionately say "Hello Mi Padre" the moment he saw me and give me a kiss and a hug worth a million dollars.

Trust me.  I would push his buttons as well, walking into his house grandstanding and telling him that he should not bother to get up to help me with the luggage as we had arrived from our 12 hour trip to stay with them.  I would call him regularly and give him crap for not calling me during the week.  His response was that he always spoke with Luisa and asked for me, and that he prayed for me every day.  He said he just knew I was busy and did not want to bother me to which I would reply "yeah, yeah, yeah". To which I would hear the familiar "Mira you bitch" again.  We would then both laugh.

It was that relationship that I had with him that truly helped me form a better and stronger bond with my own father as well as with my sons.  The kind I always wanted with dad when I was growing up and eventually got.

I would go on to establish a similar relationship with my own sons finally understanding that there was more to being a parent that ruled by rule and respect but becoming a confidant and trusted adviser.  The first person you should be able to talk to when you need it most. A parent that would listen as much as preach but would finish up with a hug afterwards, every time.  One that would apologize when recognizing fault.  One that would not be afraid to show affection.  In public.

In the end, I lost my second father on March 11, 2019.  Within a few weeks just shy of a year from losing my own father on April 2, 2018.  Humberto gave me the character and wisdom that led me down a better path towards fatherhood.  He instilled in me that Life is for Living and enjoying the moment and not for reflecting the "what if's" of missed opportunities.  He introduced me to the value of having friends and going out to eat as a family on Sundays after church to be thankful for what we have.  Not just on special occasions.

The value of great music and great food but best of all, the great company, primarily one's own family, that brings and ties it all together.  I will miss the moments of just he and I sneaking out to eat the chicharrones and other things that Martha would tell him not to, because he knew we would both enjoy it.  Moments he shared with just me.

I was there when he took his last breath, holding his hand, kissing his forehead, praying for him like he had done for me for so many years.  One of the most loving, caring and honorable person I have ever met and for giving me my wife of 34 years, his precious "Baby".

I used to tell him that I wanted my money back when there were times that Luisa would push my buttons.  His response was "Listen, you pulled and I pulled.  You pulled and I pulled.  Finally you pulled, and I let go.  It's your problem now."

Rest in Peace Mi Padre and Thank you for showing me the value of family and living for today, for without you, I would not be me.

Reflections of a Father - My Dad

Leading up to Father's day, I can't stop but thinking about what kind of Father I am, or at least try to be, and how I got here.  Especially in the past 1.5 years since losing what I was blessed with, and  what I could call, the "Holy Trinity" of fathers.  My Dad (Rafa), My Father-In-Law (Humberto), and My Brother-In-Law (Miguel).  Each one deserving of a separate tribute to who they were and how they impacted me to become who I am.

My Dad.

Born in 1936 in the town of Jayuya, Puerto Rico and leaving us in 2018, the last almost 13 years, since he retired and moved down to SC, were the best years of my life with him.  Yes, he had his way of annoying the heck out of me to wits end with his stubbornness and being set in his own ways, but those were a nit, compared to the laughter and incredible memories we built together over the last years of his life that healed all wounds between us.

From the beginning, all I wanted to do is make my dad proud.  I remember when I was very young, the man I knew was a guarded man.  An honest man.  One that pushed you to better yourself, because it always appeared nothing you did, would be enough.  His values of his family, his work, his word defined who he was.

I was a descent kid, never getting into trouble, but never standoffish or sticking out.  Very shy and always respectful.  A clear tribute to who my parents were, but especially my dad.  Humble, Honorable, Respectful, Hard working, Love of Family, Faith and Grateful to be able to enjoy the most basic things in life.  Those were all of his primary values, in no particular order, and they define me as well.  Well maybe the first one is something that can bet questioned at times, but we're not going there at this time.

Until I was able to evolve into my own identity, confident of my ability to judge right from wrong, I respected dad, but mostly because I feared him.  He was not mean or evil, but he was definitely strict.  He did not tell you he loved you, but you absolutely knew he did.  He did not raise his voice unless you did something that deserved it and so much more.  He had high expectations of us, but most of the time, looking back, he was not being unreasonable.  He was definitely old school though.

I was a good student, mostly bringing home A's and B's, but at times got my fair share of C's and D's also.  Especially when I got into this mode of not doing my homework when I was in elementary school.  Looking back, I was just lazy but also bored and distracted.  I would bring home my report card with the A's and B's when I made the honor roll, but my dad's response was always, why did you get a B and why not an A?  I need to try harder.  He would then go on to tell me that he did not have this chance to go to school.

When he was about a month from finishing up his 2nd grade, his teacher told him that he had been promoted to the 3rd grade and that he did not have to come back for the last month.  He had learned everything he needed at his age.  His father took it as he had learned enough and took him out of school so he can tend to the animals, do outside chores and bring his lunch to the field where his father worked.

Dad repeated this story every time we got our grades or when he let his guard down and had one too many drinks.  His sadness about not being able to go on to college and get a career to change the pattern of poverty and a hard life he had really bothered him and he let us know every time one of those two things triggered this pain.

Dad loved his baseball, especially his Mets.  I did too.  We would always watch it on TV, even though we grew up about an hour or so from Shea Stadium.  Going "to the city" was not something dad was anxious to do.  He actually lacked the confidence to do that and always waited for a trip to go with several other families and friends, usually sponsored by the Puerto Rican club that dad was a key part of.  Actually, it would not surprise me if it was always his idea but he usually worked with someone else to rent the bus and plan it.  That's when we would go, to get the nosebleed seats and experience hot dogs at the park.  That was a once a year or every other year event.

I played baseball when I was growing up and loved the game.  But for me, it was a lonely game as dad would not go to many of my games.  He would come home from work and even though he had nothing to do, besides watching the Mets on TV, he would not attend my game except for once in a while.  One time, when I was about 12 and had come home from one of my games, I asked him, how come he would not go to my games, and his response was, "Pa que? Si tu solo va a poncharte." (Why?  All you do is strike out.).  Looking back, he probably made me more nervous when he did show up that my greatness in the diamond, at least in my mind, was only when he wasn't there.  That's when I seemed to play my best.

Every week, it seemed, he would write letters to his family in Puerto Rico.  He would send letters to his parents, his brothers and sisters, asking how they were, reporting what was happening in NJ.  It is how he communicated with them and stayed in touch.  Of course, that was way before computers and even though we had a telephone, they did not in Jayuya, and phones were for emergency purposes.  If we needed to get a hold of them in an emergency, then dad would have to call the police department in Jayuya, and specifically ask for one of my uncle's brothers, to drive up and give a message to my dad's family, so that they can call him collect, from the phone booth in the center of town.

This was especially true every spring, as my dad's brothers, would be making the annual trek to NJ from PR, to work in landscaping with my dad.  They wanted to know if he had secured the job for them and how much they would be getting paid, to see if it was worth them coming.  Making money in PR in the 70's was very difficult.  So many people left there for the Spring/Summer/Fall to work in the fields picking tomatoes and crops, landscaping the highways and personal homes that hired contractors, or odd jobs and ends.  My dad would send them money at times, to help pay for them to come or just because he had that duty to send money he earned to them.  I remember my mom and I getting money orders to send to them in the letters dad wrote.  Then seeing my uncles come, was something we all looked forward to.  To this day, the love and admiration I have for my family in Puerto Rico is completely due to the close relationship my dad had with his family.  He bestowed and nurtured that bond with them that we still feel deep in our hearts.

My dad got up in the morning around 5 AM, had his breakfast, usually cereal with coffee, which he happily shared with the dog, and was out the door by 6 AM.  Let's be clear, the cereal was Corn Flakes, and the coffee was what he poured in his cereal, along with a separate cup.  Try it one day.  Even our dog Rusty loved it.  No special dog food for that dog, and definitely no mostly sugar based cereal for us.  Corn Flakes and Cheerios were all we had growing up.

However, seeing him get up early to go to work, and come home around 5:30 PM, take a shower, have dinner and then settle in at home, was the routine, every day.  He also expected us to be home at that time.  In the town I grew up in, there was a fire alarm test that occurred every night at 6 PM.  His expectation, aside from my baseball games, was that if we heard that sound, we had to be home, inside.  I know it seems hard, but I also know it was harder for my sisters who did not enjoy the freedom I had to at least be out around the neighborhood playing with friends until then.  This comment is not to show his unreasonableness or strictness but his desire to protect his family and ensuring that we were raised right and did not get into any trouble.

That said, it was not like we played board games or cards with him either. We would watch TV, the only one we had in the house, so if it was not baseball, that's when we would watch other stuff like Little House on the Prairie, the Watson's, or some other western which he loved.  Our Sunday night highlights were a Disney movie they would give on TV.

Every Sunday we would go to church and we needed to be there 30 minutes before mass.  Dad's view was that if we were to arrive someplace even 15 minutes before we were supposed to be there, we were late.  He would pray every night and make sure we prayed before we went to bed ourselves but we never prayed together as a family.  Matter of fact it was mom who taught us to pray.  Born a cradle Catholic, Dad believed that the Catholic church is the only church and faith.  That was a key part of who he was and how he raised us.

When dad would have his talks with me, it usually ended up with a handshake to make sure I understood what he was saying and to make sure I kept my word.  His word was his bond and I grew up thinking the same way.  If you are going to say or do something, mean it.  Otherwise, don't do or say it at all.  There was no hugging after the fact and especially no kisses, but there was no doubt in our minds he loved us. It was just how he showed it and who he was.  His "You know about, you know" conversation to me before I got married was a beer and a handshake when I said, "yes dad, I know".  He then gave me a hug and laughed.  Clearly an uncomfortable discussion for him to have, or not have, with me.

We used to always ask for the "Bendición", which is to ask for a blessing, that almost all Puerto Ricans ask, from their parents and elders.  At one point, after I turned about 16 and was starting to define myself and put my own stake in the ground, I asked him if he would ever deny me a blessing if I asked for it.  He was taken aback and said no.  I then said "Then there is no reason for me to ask for one as it is implied that I will always get one. I prefer a hug and a kiss when we greet or when we leave as a show of affection".  He looked bothered about it, but then that's what I got ever since that day.  More on this in another post.

I can go on for quite a bit with these memories but my point is not to focus on the negative aspects of my simple upbringing, but to focus on the important memories and how he made up for his demeanor, later in his years as he mellowed, had grandchildren and retired.  It was what he knew and what had learned himself growing up.

Over the years, after I moved down, dad would come to visit us a few times a year and it was obvious that he missed me and I of course, missed him.  When he was getting up in age, nearing retirement, I had to take an emergency flight up to NJ, due to an illness he had that put him in the hospital.  I told him that he had to move down.  That it was time for his retirement but also promised him that I would take care of them.  It was our turn to do so.

To my sons, nephews or nieces and the rest of the family, I am sure the words here are probably strange or come across like I am describing a different person.  Dad or "Papa" is, or was to them nothing like what I described.  He would call them on their birthdays, tell them how much he loved them, would make their favorite meals, always gave them a hug and a kiss, and really had no problem showing them how much he loved them.

When asked to go to a baseball game, go to a park, or even go to a ballgame, dad was "all in". But the thing he loved most, was to be with all of us. He loved playing dominoes, making his delicious food, and just being together.

My core values towards working hard, what I say and how I act, my love for family, enjoyment of coming and being home with Luisa, respect for others, personal humility, in that I don't brag about what I have or others lack, honor in doing what is right and showing people through my actions and not just my words are all rooted in what I learned from Dad.  My faith, while not as blind to other religions or faiths as dad, definitely shaken through what I have been through recently, still at its core, guides me to talk the talk and walk the walk.  At least through my actions and not just my words.

Dad changed over the years to soften his edges towards many things.  He was still stubborn at times, but very open to change.  He still struggled with words though.  He would tell us he loved us but usually, only as a response to it being initiated by us.  He would, however, pick out the most amazingly deep and profound cards at the store and it was clear he took a long time to get just the right one, so that he could express how he really felt.

Just like a boulder with rough edges, over time, it gets weathered and smooth.  Dad was the rock of the family and his character and ways became my foundation as a father.

A New Normal

Exactly one month ago, mom took her last breath.  She was surrounded by her family at her bedside, minus her husband Rafa who left this earth 14 months before.  We were there holding her hands, praying for her, kissing her cheek, rubbing her forehead, touching her face, while at the same time for about 5 days in a row, giving her Morphine almost every hour like clockwork.  Trying to ensure she did not suffer.

Immediately after, we did what we had prepared for, having gone through this process just a year earlier with dad, to make sure that we completed our mission of taking care of her.

For over 12 years, our lives revolved around mom.  Ensuring that we were there with her and for her. To support her and support dad taking care of her.  To capture as many memories as possible before they disappeared due to the Alzheimer’s disease that was working against our family.  Recording everything in logbooks that we noticed during our shifts, or something priceless that all of us should know.

We were "Mom’s Team” because mom needed a team, full time, to be there for her.  The team, consisting of Evelyn, Carmen, Annie, Luisa and myself, captured everything in our Mom’s Team message thread.  The messages flew constantly from every one, during all of the shifts we took throughout the day, every day.

Once a month, we would get together to work out the next shift schedule for the next month but most of the times, the majority of the shifts had a familiar pattern.

For about the last 4 years of her life, mom was bedridden.  Before that, for about a year or two, we took our shifts to help dad by taking care of the heavy lifting of tending to mom, feeding her, bathing her, changing her clothes, putting her on her bed and getting her out of it.  The shifts were broken into breakfast, lunch, dinner and then the evening shift.

It was how we rose up to the occasion to do our part and take care of her when she needed us most, but also when dad needed us most.  To care of her.

When we lost dad, and moved mom to Evelyn and Manny’s house, the pressures and time went from the 4 shifts to a 24 hour clock since we did not have dad to fill the gap between our shifts.  Even then, during the last few months before losing dad, he had lots of hospital and doctor visits that pulled on us from both ends.

There were times when the stress was intense since we had other things to do as well, such as business trips, doctor’s appointments for ourselves or for our kids, baseball games or swimming practices.  However, no matter what we had needing our attention, our first priority was to make sure that someone was available to cover for the other and make sure mom, and dad, got the help they needed.

For 12 years, we made it our priority to focus on them.  We cried out of despair of not being able to do more to stop or slow down her steady decline and prevent the inevitable.  But also from exhaustion of working a full day, going to take care of them, and seeing her enter a new phase of her disease in which she would forget who we were to her, who our kids were but most of all, who she was.

Now, 30 days later, after we said our last goodbyes and laid her to rest, we walk around with an intense feeling of guilt because of all of this "extra time" we now have.  Where we are not rushing to be there just in time for our shift, planning their next meal or the fact that they are not here with us.  That extreme sadness of not being able to say Hi Mom, or Angelita, which is what we would almost always say, because she did not know who Mom was or that she was Our Mom.

The hole in our hearts from the pain of losing them has been overshadowed for so long with our duty to serve them, that it feels strange not being stressed to do what we had to do in order to take care of her, but having some sense of relief that things are more relaxing for us.  The guilt of not having that stress which also means that we don't have them here with us.

It’s a new normal.  This uneasy feeling that in reality, is nothing more than what it was like, back 12 years ago, before we became Mom’s Team.

Not a day goes by that we don’t stop to look at the clock or look at our phone and wonder what messages we have missed in the Mom’s Team thread.  And when a message does appear, it is strange looking at the group title "Mom's Team" when Mom is no longer with us.

Everyone of us, glad that mom is not suffering anymore and is once again, back in the arms of the love of her life, have been overcome with a strange sense of uneasiness thinking we need to be somewhere else, living what has been our routine of the last 12 years.  We miss you dearly Mom.

A New Normal.

Mom's Eulogy - May 15, 2019

Before I begin, I want to thank all of the friends and family who came to pay respect for our mother. 

So where do I begin.

Do I start with the disease that took her life?  That for the last 12+ years was responsible for stealing every bit of her soul, her identity, her inner beauty? The disease that robbed her of her ability to fully enjoy her satisfaction of finally owning a house that she so desperately wanted.  Enjoying the laughter and simple beauty of her grandchildren, great grandchildren and of course her children.  The disease that destroyed her humility and ended up putting her in a position that she would have absolutely been distraught about and ashamed of.

No. Let me start at the beginning. Angela Gonzalez Nazario, was born in 1942. The daughter of Valentin Gonzalez and Julia Nazario.  Her mother died when she was 6 years old.  Her father, distraught and unable to deal with incredible loss, gave away the children to be cared for by family and friends.  Each of the four, in separate homes, growing up for the next 5 years, until Valentin was able to bring them back together.   Angela, at the age of 11, responsible for the chores of being a homemaker, became the mother she did not know, to her brothers.  Learning to cook at that early age while her father and brothers worked in the fields.

10 years later, she married the love her life, Rafael Heredia Pagan.  6 years her elder, he saw her grow up as a neighbor.  Moving to NJ in 1964, to begin a new life, not speaking the language, knowing the customs, dealing with the harsh winters or really knowing anybody except for the immediate family, and a select number of friends who also made the move there. 

As a teenager, I remember our apartment always full of kids, that mom would take care of, just so that we had extra income coming in.  At times, there would be 3-4 of them, on top of the 4 of us.  She earned the trust of every family that needed a sitter and the love of all of those who she took care of.  She was Mama, or TiTi to dozens, if not more, kids that to this day still talk about her and the impact she had on their lives.  Her love for kids was unmatched.  It was hard work and when the parents came to pick them up, I remember the look of exhaustion that would appear and then the deep sigh of relief that the job for the day was done.  While they were there though, she did not let anybody know how hard it was to do this.  Having two sons of my own, I don’t know how she did it, all of these years with all of these kids.  She was practically a mother to everybody in the town.   For someone who lost her mother at such a young age, she became the best mother anybody could have. 

Never raising her voice, providing comfort when we needed it, as sweet as can be.  An Angel sent down from heaven like her name implies.

This awful disease that she dealt with emphasizes your personality.  With mom, her love for kids and family grew even stronger.  As the disease progressed, she would tell us that she saw a little girl in the house and why could we not see her.   She would wave and talk to the little girl that was completely real in her mind.

The way her grandkids and now great grandkids showed their love for her, is a sight to be seen.  The pure love from a child who can see they were getting unconditional love in return.  Her life was her family and her greatest joy in this world was being a mother.

Oh and was she great.  I remember the simple things like a home baked cake for every one of the birthdays I had growing up.  Looking back, what I never realized, was that the cake had only my name it even though we share birthdays.  After she retired and moved down in 2005, I made it a point to show up at her house with a cake, with both of our names on it so we can celebrate it together.

Mom put everybody first, before her own needs.

The common phrase in a marriage vow “to have and to hold from this day forward, for better for worse, for richer, for poorer, in sickness and in health; to love, cherish, and to obey, till death us do part”.  Mom’s marriage was the epitome of that phrase.  Mom struggled with poverty as a child and to be honest, lived a very simple life throughout most of her life deserving of so much more. 

She never went on a vacation, except for the trip to Puerto Rico to visit Dad’s family that we took every 5-6 years.  Mom did not get to live the life we live today going to restaurants, visiting different cities, or taking a week to go to the beach. 

Today we would be bored out of our minds, year after year repeating the same pattern with nothing else to look forward to.  Yet with mom, you would never see the unhappiness in her life.  She always had a smile, even if it was for the simple things we did. I don’t ever remember mom wallowing in her sorrows, or even being too sick to get out of bed to do what she had to do.

Mom and dad had enough “to get by”.  But what she did not have in money, was more than made up for, with the richness of love and family.

Eventually she did get that house, that she had always asked me to buy her when I was growing up.  But she and dad did that all by themselves upon retirement.   She worked in the evenings, as a store clerk, saving up everything she earned, and buying tons stuff for the dream home she was going to get when she retired.  Within a year of getting that house, we started to see signs of her forgetting things and eventually she even forgot it was her house.  I had never seen mom more happy than when she moved into her “casita”.  Only to have that happiness robbed when she forgot it was hers.  During one of her episodes, she complained and cried that she wanted to go home, even though she was in the home that she had always dreamed about.  We had to take walks with her outside, around the block, so that we can end up back at “her house.”

It was because of mom that we would go to church every Sunday. As she was advancing in her late stages of Alzheimer’s, I remember asking her, after she had already forgotten who I was, if she believed in God, and her answer was an emphatic “Oh Yes”.  But she was not able to say more than that.  She once saw herself in a video my sister recorded and she made the sign of the cross and blew a kiss at herself.  Her faith was unwavering.

So was her love for dad.  Growing up, I could not really see or witness the love for each other.  I knew they loved each other but besides a tap kiss on the lips, they were not ones to show affection to each other.  However, after their retirement, and us seeing them almost every day over the past 14 years since they moved down, it was so evident.  Especially when dad went into caregiver mode.  Holding hands as they walked, the constant kissing or even the attempt by dad to get a kiss when mom was no longer giving them.  The caress of the hair, the constant nagging from dad about how we were not doing a good job taking care of her was unbearable at times.  But she was the love of his life and he was hers.  I remember the day that I mom forgot who I was. I walked in to their house on Father’s day and everybody was outside in the back of the house for the barbeque and mom was hovering around the kitchen/breakfast area.  I greeted her with my usual “Hello Lady”, and immediately saw her back up, unsure of who I was.  It had already happened to my sisters and brother in laws and I knew it was just a matter of time it would happen to me, though I prayed it would not. 

I leaned against the couch and said “You know I love you right?”  Very simply, and soft spoken.

She continued to look at me, then said “Yes, but my husband is right there.” As she pointed to the backyard. 

While I will miss taking care of her every Saturday, crying while listening to the old school music that she and dad grew up with, especially the ones that spoke about how much love they had for each other, I am at peace that she is no longer suffering through this dreadful disease that took away her identify and her happiness but in the end, gave us the opportunity to come together as a family, to give back just a portion of the love and care she gave to us.

My wife Luisa, once shared something with us that read: 

“There is much pain to endure when watching a loved one suffer with Alzheimer’s Disease.  There is the pain of perpetual grief.  There is the raw wound of continual loss.  There is the struggle to preserve dignity and the desire to respect the present and cling to the past. 

However, in the midst of the heartache there is a small glimmer of light that exists to remind us of the things that Alzheimer’s can’t take away…the warmth of a touch, the importance of smiles and laughter, and the knowledge of what it truly means to experience unconditional love and acceptance.”

That was exactly what we experienced with mom.  Unconditional love in its truest form in the midst of an indescribable pain that was so undeserving.

We have been grieving for 12 years since first finding out about her disease but the disease did not define who mom was.  It helped us see her true inner beauty.

Until we meet again my birthday buddy, my beautiful mother, my dear Angelita.

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Here is the Memorial video we did for her as well.

My sisters (Evelyn and Carmen) and wife (Luisa) also eulogized mom today.  Here are all of the Eulogies.