Sandwich Generation Caregiver Caring for Her Father with Parkinson’s

An Interview with Michelle

In a bustling city like New York, life never slows down. For Michelle, a first-generation Paraguayan-American, a shift occurred that transformed her life. As a member of the “sandwich generation,” Michelle finds herself in the unique position of raising her two children while also caring for her father, who has Parkinson’s. Join us as we explore Michelle’s journey from estrangement to reconciliation, her evolution into a caregiver, and the valuable insights she has gleaned along the way.

Tell us about yourself

I am a first generation Paraguayan-American living in New York City where I recently moved from the suburbs. I am 36, have two children ages 16 and 9, and I help take care of my father who has Parkinson’s.

What is your family dynamic?

My parents divorced when I was 15. I have two older sisters, but I am the primary caregiver for my father.

What led up to your caregiving?

Honestly, I never thought I was going to be in this position. I’m 36 now, and my father and I did not have a close relationship because he divorced my mom when I was 15. Our relationship broke because of divorce.

Now I see that the way that he is with Parkinson’s— he’s very, very vulnerable and fragile. Everything that happened in the past between us kind of went through the window, and I locked it up. I’m like, “the past is the past and I’m leaving it there.”

Now, I’m here presently with my father. It’s time for me to recover the time that we lost. So that’s where I’m at right now with the caregiving and I never thought I was going to be so hands-on. The way I am with him…it came completely naturally.

Tell us about your caregiving experience.

My dad is South American and is very macho. He was never open with his health. It’s a cultural thing.

I saw a physical change in him in 2014. He was going to a lot of doctor appointments and was diagnosed with Parkinson’s. He was splitting his time between Paraguay and New York.

He continued to split his time there in the following years. His plan was always to retire to Paraguay since that is where he is from.

In 2021 my dad was in Paraguay and we knew something was wrong. I think he had low sodium and was hallucinating. The caregiver sent a video. My dad was staying with family, but they were not taking care of him. My sister went to visit him, but didn’t bring him back to the U.S. We got into a huge argument.

In 2022, he got off a plane from Paraguay to New York and he was in a wheelchair. The wheelchair situation was very new to me because I didn’t know he couldn’t walk. The flight attendant asked me, “What’s going on with your father? Who took care of him?”

His hands were closed. He couldn’t move his hands at all. I told my sister we needed to go straight to the hospital. So we went to the emergency room and he had high blood pressure and elevated blood sugar. He had elevated everything. We thought they were going to call adult protective services on us even though we hadn’t been with him.

After that, we made the decision that he should live in a nursing home in the U.S. Since then he’s been in four different nursing homes, but we are happy with the latest one. They have Spanish-speaking employees so my dad is comfortable. And he has a roommate who speaks Spanish and they’ve become very close.

I visit him four days a week. I’ve become his hygienist, his barber, and his personal chef. I check all of his clinicals and go to all of his appointments. I’ll call the doctor. I’m in touch with all the providers across the board.

I went back to school to study medical billing and coding and to become a medical administrative assistant. I got certified in February. I have a book on medical coding that I bring to my dad’s nursing home. So if I have to research anything, I go to this book and it gives me all the diagrams of the body and I print it out, and I try my best to hold it close to my father because he only sees two to three feet in front of him.

How has Trualta helped?

I was able to read through Trualta’s resources and join webinars. I was able to reset my attitude. Now I’m all about being prepared. When I go to the doctor’s office, I have my questions and if they need anything, I call a couple days before the appointment, just to ask, “Hey my dad’s a resident, the nursing home. What do you need from me?”

What was the biggest surprise to you as a caregiver?

I always looked at my dad like my superman. He’s a big, powerful, strong man because he used to build houses and work in construction. And now I see him like a little fragile little boy. And that really was a really explosive shock to me because I’m in this sandwich generation where I take care of my kids and my parents.

What advice would you give others?

I would say take one day at a time. I’m not a superwoman. I can’t handle everything. So now I prioritize and if I can’t handle one thing, I have to postpone it and see if I can handle another thing. If you handle too much you’re going to explode. Caregivers need to understand their body as well. When caregiving, you don’t think about yourself. You think about the person you’re taking care of, and you’re so hands-on that sometimes you kind of lack awareness of your emotions.

Best tips?

  • Bring a notebook and pen and take notes.
  • Join the Parkinson’s Foundation and Michael J. Fox Foundation if you care for someone with Parkinson’s. They will send you resources, like forms to log medications.
  • Go to the library. I was able to find a caregiving book and courses and workshops they offered.
  • Eat clean. You need to be in the best health to take care of someone else, especially if you are lifting them.

Do you consider yourself a caregiver?

I see myself as my dad’s guardian angel.

What has been helping you?

One thing that always helps is music. I love heavy metal and I go to concerts. I am really into music because my father loves music and we used to listen to Selena a lot. And so every time I listen to music, I embrace that because he taught me to enjoy the rhythm of music and to be happy. Listening to music is a huge release.

I also recently started going to church again. I surprised myself too because I never thought I was going to be this loving towards my father after the broken relationship that we had.  And I forgave him and I forgave myself for having that type of anger and rage towards whatever happened. Now I’m just saying, “it is what it is.” He’s here. Let’s make the best of it. And let’s make him comfortable and make him feel like a human again.

And I started eating clean. I used to grab a dollar hamburger from McDonald’s, but that was harming me because the food was not healthy enough for me. So I was getting very tired and irritable and wondered why I felt that way. It turns out I wasn’t eating the right food. I saw a nutritionist. We need to listen to our bodies and help ourselves too because if you’re feeling this way, how are you going to help that person?

What do you miss?

Honestly my life changed a lot, so I feel kind of peaceful right now that I’m in this role of caregiving. I like dealing with what I’m dealing with now and looking back at what I went through. I’m going to continue this role now. Before caregiving my life was boring. I had my 36th birthday party at the nursing home. It was such a good time. They had a band and I brought decorations. You would think I would go to a restaurant or to a club or something, but I had the best party there.

You are not alone

To all the sandwich caregivers out there, you are not alone in your journey. Michelle’s story is a testament to the resilience, love, and dedication that defines the role of caring for both your children and your aging parents. It reminds us that while the road may be tough and filled with unexpected challenges, there is also room for healing, growth, and even joy. Embrace the support available to you, whether it’s from resources like Trualta, community organizations, or friends and family. Remember to take care of yourself, seek help when needed, and celebrate the small victories along the way. Your strength and compassion are making a profound difference in the lives of those you care for, and there is a community of fellow caregivers cheering you on every step of the way.