Carmen Cusido on caring for her father, while grieving her mother

Q: Can you tell me about who your father was and the relationship you had before he was diagnosed with dementia?

A: It was always a very fraught relationship, unfortunately. My mother was 40, and my father was 54, almost 55, when I was born. Not only did my dad have the trauma of having to leave his country, Cuba, because of a dictator—Castro—but he had other personal family traumas that he had dealt with. 

Back then, therapy wasn't something people would suggest. A couple of times [in my childhood], I saw him crying, and my mom motioned, with her finger to her mouth, as if to say, “Don't say anything. Don't embarrass him.” My mom was Cuban too, but very American in her parenting style and discipline. 

My dad was very punitive in his style of discipline. If I misbehaved, he’d pull my hair or say horrible things. He would also frequently spank me, but he would try to do it when my mom or my grandmother were not around, because they would stop him. My mom or my grandmother would typically admonish him by saying, “That's not the way to discipline a child.”

Between his style of discipline, plus the parochial school that I was going to and being bullied there, I ended up with an eating disorder, anorexia, that almost killed me when I was 13. 

Q. I'm sorry. I'm sorry.

A: Thankfully, I survived that. A coping mechanism was always school, school, school, be a nerd, just delve into books.  

Sometimes, [my father and I] had a good relationship. He was a really smart man. He was a small business owner. We would have conversations about everything from the 1999 Columbine school shooting which, pre-September 11th, was the news event that had traumatized me the most. We would have conversations about gun regulations in the country. We would have conversations about dictatorships around the world.

When the relationship was good, it was really good. Even though he only had a sixth grade education, he was very smart and asked good questions. But when it was bad, it just felt really destabilizing and horrible. As I got older, I tried to bypass my dad altogether and communicate with my mother.

Q: Is there a history of mental health issues in your family?

A: Yes, mostly on my dad’s side. My father was briefly on antidepressants during my years living with anorexia and then again after my mom died in 2019. There was a history of mental health issues, specifically depression, in my family. I heard that my paternal grandmother, who died before I was born, had been diagnosed with depression in adulthood.

Q: Did your father ever talk about his childhood?

A: His father left him, his sisters, and his mother when my dad was around 12 years old. He essentially had to leave school early in sixth grade to take care of his mother and sisters. I think of this as a kind of abuse and neglect, and part of the lifelong trauma that my dad lived with. 

Q: Can you tell me more about your father’s years in Cuba before he moved to the United States?

A: He had a civil service job in Havana, but once Castro’s dictatorship started, my father knew he wanted to leave. He visited the U.S. embassy every day until he got an exit visa for himself, his first wife, and his older son, who was born in Cuba (the younger son was born in the U.S.). … Essentially, he had to put up his house in Cuba as collateral to be able to leave and was told by those who took power, “You want to leave? Give us your house. You don't own your house anymore. The house is ours.” And that was very upsetting for my father because he had to work so hard all of his life. … But my father said, “Take the house. I don't care.” He left Cuba in November 1960. I think that was why there was such an emphasis on him owning the house I grew up in. He never ever thought of returning to visit Cuba again.

Q: What language did you speak with your father?

A: I spoke more Spanish with my father and Spanglish with my mother. 

Q: What do you call your father? 

A: When I was a kid, I called my mother and father both by their first names, because I didn't know better. My mom and other family members were calling my father Papi to encourage me to call him that, and it finally stuck.

Q: What was your father’s job?

A: For most of his life, my father was a small business owner. My father had owned his shoe store in my hometown in New Jersey, and he also worked as a manager for a bus depot (the buses would go from New Jersey to Florida). … For a long time, both of my parents were working. My mom had been a public school teacher, but when I was in fifth grade, going on to sixth grade, she took an early retirement due to medical disability. She started experiencing, sadly, a lot of different health issues.  

Q: What did your father do when he was not working?

A: He watched English-language TV. In fact, his favorite show was Family Feud. That was his thing. He also watched many different programs on Univision and Telemundo. 

Q: Did your relationship improve when you got older or did it stay the same? 

A: It almost got worse, because the older I got, the less I was willing to put up with his behavior and anger outbursts. When I was little, I would either be scared of him or try desperately to get his attention. It would be like, “Dad, I did this. Can you pay attention? Can you love me?” He was very dismissive, which I realize now was due to his decades of trauma. But when you're a kid, you don't realize that. You think, “What the hell did I do wrong? What's wrong with me?” This guy has a shitload of trauma that he's been holding onto for decades. 

Q: It sounds like your relationship with your father has been challenging for many years. What were the circumstances of your father’s illness? 

A: My father had a lot of health issues, particularly in his later years. In addition to dementia, he had diabetes; he had a past history of stroke and high blood pressure. He had Parkinson's. Near the end of his life, he struggled with depression and grief after my mom’s death. 

Q: I’m sorry to hear that.

A: My mom passed away first in 2019, even though she was 14 years younger. She had stage 4 lung cancer. She died on April 28. My birthday was two weeks later, Mother's Day, May 12. 

Q: How old was your mother when she passed away? 

A: My mother was 76 when she died; my father was 91, almost 92, when he died. He died 16 months after she did. 

When my mom, Magaly, got sick, she was sick for a longer time than she'd let on. I think trying to spare us all made things harder. It wasn't her fault. Sometimes when you shield people too much, it's actually worse. 

[My mother] had told me about a year before she died, “Look, your father has dementia.” Because he was so high-functioning, at first, I thought maybe the doctor had it wrong. I didn't want to believe it. He knew who I was; he knew who people were. He had always been characteristically angry; I thought that was just him.

[But] my father had Alzheimer’s.

I didn't really realize it or understand it until after my mom passed away. I didn't realize how much he would sundown or anything like that because, again, my mom was the sole caretaker until right before she died. 

Mom never complained, but there were snippets that I saw during the time that she was in the hospital. She had said to me, “Please, whatever you do, don't put him in a home if things get really bad. Please send him to live with his [relatives] in Florida.”

It was like being hit with a ton of bricks. “Wait, what's happening? What's going on?” I promised her, but I was not sure what I was getting myself into, quite honestly. She died a couple of weeks later.

Q: Can you tell me more about how you became your father’s caregiver after your mother passed away?

A: My mother had handled everything: the caregiving, the doctor’s home visits, the health insurance, the finances, everything. 

I became my father’s caregiver by default. My father had a sister who was only a couple of years younger than him and who lived in South Florida. I pre-vetted her. I asked her to explain what the [caregiving setup would be]. I'm actually grateful for how honest she and her son, who was living with her, were. They said things like, “Oh, he would sleep on the couch,” or, “We'll try to figure it out when it comes to transportation to medical appointments.” They didn’t have any game plan. 

They started to ask me questions about his money and bank account. It didn’t feel right, so I decided the best outcome for my dad was to stay in New Jersey, where he already had a care team in place and where my then-partner and I were looking out for him. 

Q: That sounds really hard. Can you please tell me more about how your father’s dementia symptoms progressed?

A: My ex-fiancé and I were spending a significant amount of time with my father after my mother’s death, especially during COVID, so it became very apparent. 

In the morning, he had his set routine, and even after my mom died, he would sometimes even put out two cups of coffee [including one for his late wife], things like that. He had his routine down: the morning pricking of the finger to check his blood sugar, since he was diabetic. I wasn't living there, but I was in the trenches during the worst part, which was at night. He would get agitated and physically restless from being only at home, and he would frequently threaten to move to Florida.

In the summer of 2019, I took a quick vacation because I needed a break from caretaking. One afternoon, I told my father, “Don’t worry the cats have enough food. You're fine. You have everything.” I told him, “These folks [neighbors and others] are going to come visit you. It's okay.” That was one of the scarier days. He got so angry, and he accused me of taking my mother’s money for the trip, which was not true. He twisted my arm so far back, had my then-partner not walked in at that moment, it is possible my dad would have broken my arm.

Because of Dad’s past trauma, because of his past experiences in Cuba, he would accuse the government, he would accuse the bank, and then he would accuse me of taking money. The truth was, no one was doing anything nefarious with his money, but the way his trauma manifested, he became obsessed with money and finances until the very end.

My father was on so many different medications for so many things—it was a lot. But the pharmacist, who had been friends with my mom, gave us a discount. 

About five or six weeks before my father died in 2020, I was on a call with the pharmacist. The pharmacist said, “It's going to be this much money. These medications are covered by insurance; these are not.”

I said, “No problem.”

All of a sudden, like a horror movie, I turned around. My father is literally right behind me with a hammer. He accused both the pharmacist and me of lying about the cost of the medications.  

I intercepted that hammer before it hit my face. That was the first time I worried I’d have to break my promise and place him in long-term care.

Q: That’s horrible! I am sorry you experienced that. How long in total were you a caregiver for your father? 

A: Sixteen months. I wasn't there 24/7, since I was living with my ex-fiancé at the time. But there were moments, especially near the end of Dad’s life, where both [my ex] and I had to essentially partially move back in with him because he needed more caretaking.

Less than two months before my father died and before he had a mini stroke, I was sitting with him at breakfast. He was in a pleasant mood because it was morning. He was looking at his checkbook, and then he looked back at me. I said, “What's wrong?” He said, “Can you believe I forgot how to write out a check?”

His whole life, he took pride in paying everything on time every month. Not owing money was his thing. I had already begun setting up online automatic bill pay so my father didn’t really have to worry about paying the bills. I told him, “How about you watch me? See how I'm doing it? And then you can copy me.” I shredded those checks later.

Shortly after this, my father had a transient ischemic attack (TIA). He went from being able to walk, feed himself, and talk to needing assistance for all these basic needs, and he was no longer able to speak English. He was first hospitalized and then sent to a rehabilitation facility. Even though it was COVID, some limited visitation was allowed, as long as we temperature-screened. 

By the time he got home, he wasn’t improving, and he qualified for home hospice care. 

There were moments where I would say little prayers to my mother and to God. I would say, “Please don't let me be alone when he dies.” Thankfully, I wasn't.

I had also asked, "Please don't let him forget my name or who I am.” And thankfully, he did not. He knew who I was until he died. 

This Q&A has been edited for length and clarity. 

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