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.