My father once told me:
“Find someone who has a heart like your mother. She’s so loving, caring and hardworking. You see how she takes care of me every day? My hope is that you find someone like her – someone who values you and loves you for who you are.”
He said this to me during a car ride home after I had gone through a breakup. By this time, my father had been living with Alzheimer’s disease for four years. He’d had his driver’s license stripped away because of his cognitive impairment, so my mother and I would take turns driving him to and from work. After I transferred to the University of Virginia, I would come home on weekends to give my mom a break from caring for him Monday through Friday.
My father slowly began to forget where he lived, where he worked, and what he was going to say next. Yet, through his forgetfulness and confusion, his fatherly instincts never failed him.
Even in moments when I felt sad and alone and he had no idea why, my dad always knew the right to things to say at the right time. And while his words comforted me in that moment, there was a part of me that hurt for him. I could see how hard he tried to still be the father he once was to me while also knowing that his mind would eventually withdraw … without ever truly getting to say goodbye.
When I was growing up, my father and I were incredibly close. He would always share with me stories of his childhood.
He grew up in the countryside of Peru. As a child, he didn’t own a pair of shoes or a bed. He started working early on in his life, so he didn’t have the luxury of an education. He barely knew how to read or write. My grandmother couldn’t always feed her nine children, so it was up to my dad to find whatever he could to feed his family, even if it meant just a small loaf of bread. Despite the hardships he faced, he was always building, fixing, or painting something, and always willing to lend a hand.
His life changed for the better when he met my mother. He loved her deeply. It was the kind of love we all hope to find someday.
When my mother decided to immigrate to the United States about 30 years ago, my father followed her. Together, in a new country, they learned how to navigate the city and meet new people. They both tried new things they never could in Peru – all while knowing little to no English. Both of my parents worked very hard – my dad worked multiple jobs – but these were happy times. After seven years in the United States, my parents had saved just enough to buy their first home.
Then the harder times came.
I was sitting in my dorm studying for an exam when my mom called me on the phone. Sobbing and choking in her own words, she said, “It’s Alzheimer’s.” I dropped the phone began to cry uncontrollably. Suddenly my mind took me back to all the times I had with my father when I was a little girl – the times he took me out for ice cream, to the water park, or to breakfast at McDonald’s. And while none of those memories would ever be replaced in my mind, I knew that over time, all those memories would be erased from his. I couldn’t bear the thought that my beloved father would slowly forget the people he loved the most and everything he had worked so hard for.
When I received the news, I was only 20 years old. My dad? He was 64. While part of me grieved heavily, I also felt determined to graduate college and obtain a job that would help support my mom and my dad’s care. I felt it was my responsibility to do as much as I could. However, my mom, and even my dad, who had slowly started to forget I was in college, told me I must focus on my education.
In May of 2013, I became the first person in my family to graduate from college.
And none of it, absolutely none of it, would have been possible without the support of my parents. Even through his fight with Alzheimer’s, my dad refused to quit his part-time job because he wanted to help pay for my education until he couldn’t work anymore.
And on the day of my graduation, although we had to remind him several times why he was there, he was able to witness his American dream come to fruition. He smiled and hugged me and for those few seconds, he remembered how proud he was of me.
That was probably the last time I saw MY father, the man I knew – not the man Alzheimer’s turned him into.
In the years that followed, we faced obstacle after obstacle. There came a point when dad required full-time care. Like many families, my parents were not financially prepared for their older years. The cost of long-term care services was way beyond their annual income and taking turns caring for dad between family members was no longer working.
Applying for Medicaid was not an easy process. When my dad finally qualified for services, we thought we had removed some stress, but we were wrong. By this stage, my dad was forgetting the little English he knew and required assistance from a Spanish-speaking Certified Nursing Assistant (a CNA). Trying to find one in a rural part of Virginia was almost impossible.
When we finally did, we were relieved, but only for a short period. My dad became violent and aggressive towards my brother and my mother. After only receiving two years of home and community-based care, no home care agency felt like they could safety send a CNA to our home.
While it destroyed me in every single way possible, we decided it was time to send dad to a nursing home. This was particularly difficult for my mother. How could she and my father come to this country and toil for years only to have this happen to them? How could he not enjoy the fruits of a lifetime of labor?
We may have thought that finding a Spanish speaking CNA had been difficult, but finding a nursing home with Spanish-speaking nurses was a whole new trial. So many facilities we visited were either concerned about his behavior, had a waiting list, or most importantly, did not have anyone on their staff who spoke Spanish. Navigating the system is a big challenge for many Latinos facing Alzheimer’s disease, and I think there is a significant need for bilingual care workers who can help support our community.
Today, my dad can only speak Spanish. He is 72 years old. Although he receives great care from his treatment team, his health has significantly declined. Even through all the heartbreak, we make sure we continue to keep our Peruvian culture alive. Whenever we visit dad, we play Peruvian cumbia music and bring him his favorite Peruvian dish. We especially like to play his favorite song, “Carmen Rosa,” which is my mother’s name. While dating back in Peru, mom and dad used to dance to this song.
This August, I got married to the person my dad hoped I’d find someday.
I even received his blessing on a visit to the nursing home where he got up and danced to “Carmen Rosa,” which we played on a loop. Even though he never had the opportunity to meet my fiancé while he was able to remember him, I know he would have loved him. And he was there at the wedding in spirit; I carried a picture of my dad with me and there was a lot of cumbia!
I share my difficult experience as a caregiver daughter because I have hopes that a few years from now, another 20-something in a similar situation will not have to go through what I went through. The Alzheimer’s Association is working every day to develop innovative approaches to providing education that take into account people from all cultural, economic and educational backgrounds. Seeing the amount of awareness raised over the last couple of years – in state legislatures, Congress, through the general public – gives me hope that one day we’ll finally see the end of this horrible disease that has impacted so many of us so personally. I am ready for that day.
Reference: Originally published 10/11/2018 by Lisette Carbajal for the Alzheimer’s Association: https://www.alz.org/blog/alz/october-2018-(1)/finding-love-and-fighting-alzheimer-s-a-daughter
Since the posting of this blog, Lisette’s father lost his battle with Alzheimer’s, passing away in January 2019. ?
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