Interview: Caring for Parents and Finding Help

An Interview with Lisa

Tell us about yourself

My name is Lisa and I live with my husband and mother in Rochester, New York. I work in healthcare IT and I volunteer with Honor Flight, which flies veterans free of charge to Washington, D.C. to see war memorials.

What is your family dynamic?

I always lived two miles from my parents. We saw each other all the time. My sister lives five hours away, so I was the local daughter.

What led up to your caregiving?

My husband and I bought a house with an in-law suite and invited my parents in to live with us in 2016. I noticed their house was too much for them; my mom didn’t want to do the stairs and my dad couldn’t manage the acre of land.

Things were great when they moved in. I gave my parents things to do. I was enjoying it because we did yard work together and planted flowers. I will never take those moments for granted.

For a few years it was great.

Tell us about your caregiving experience.

I felt like I didn’t have a lot of time to grieve my father because I went right into caring for my mother. He was my best friend. He passed away in February and in May my mom was in the hospital with heart issues. I was sobbing and it was traumatizing.

When my mom got home, I oversaw her dietary restrictions and her medication management. After a surgery, she had a physical therapist and nurse checking in on her at home, but it never lasted long. No one was helping me.

She developed more health issues and started to fall. I can’t get her up when she falls. My friends have helped, my husband has helped, and I’ve had to call 911. I’ve said to my mom, “I just lost my dad. I don’t want to lose my mother.”

More recently, my mother received an Alzheimer’s diagnosis. She kept forgetting things and repeating things so I took her to a neurologist.

How has Trualta helped?

You guys are awesome, and Monique–oh my god. I joined my first virtual support group and felt so out of place.  I hung in, and I’ve met people. If you mention incontinence, they’ll say to buy “this” on Amazon. I can’t tell you the amount of tips I’ve gotten. I am using half the products they recommended.

I was able to give advice about how I started out with my mom. We’ve discussed ways to approach a relative. It’s lots of advice and talking through. You learn you’re not alone. Other people have ideas and things that work for them.

What was the biggest surprise?

I don’t think many people realize how much cleanup there is in terms of paperwork. I found out my mother hadn’t been paying bills. I found out she wasn’t on the right Medicare plan. There were months of cleanup. I don’t know how anyone gets through it. My life is trying to get her life stable and establishing a routine. I have become the parent. It’s a complete role reversal.

What advice would you give others?

It was only recently when I realized it was Alzheimer’s and I wasn’t familiar with it that I reached out to my local Area Agency on Aging (AAA). They helped me get the drug coverage right, helped me apply for Medicaid, gave me the Alzheimer’s Association’s number, and set me up with Trualta. Contact your local AAA.

Best tips?

1. Do not be afraid to ask people for help. Go to your AAA.
2. Apply for Medicaid.
3. Join Trualta support groups.
4. Appoint a healthcare proxy or power of attorney before it’s too late. I knew what my parents’ wishes were and could speak on their behalf. I could also access their bank account for expenses.

Do you consider yourself a caregiver?

I’m a daughter. I never considered myself as a caregiver. I only recently began to refer to myself as a caregiver because when I call Medicaid or I pick up prescriptions, I have to say caregiver.

What do caregivers need?

We need to be able to get help more easily. It’s not clear what’s out there. People don’t know about Area Agencies on Aging or Employer Assistance Programs (EAPs). And you go to call and it’s a nightmare. Medicaid back and forth was a nightmare. They need to make it easier because we are pressed for time and already in an extremely difficult situation.

What has been helping you?

I work from home. It’s one of the positives that came out of Covid. IT jobs are at home. I wouldn’t be able to work at an office.

In New York we have paid family leave. We get paid when we take time off if we are a caregiver. I applied for it and got the approval. My doctor filled out the form. Now when I have a long appointment with my mom, I can take the day off, but my job is secured. Instead of “sick time, sick time, sick time,” I can use paid family leave. I get 60 percent or something. It’s only a portion of my salary, but I am able to take care of her. This is huge. My boss can’t do that in North Carolina.

The case manager at Lifespan, our AAA, came to my house and filled out applications with us. Once I reached out to them, the help was good. I struggled a lot on my own.

If you are on Medicaid, you may be eligible to get a private aide. I can’t afford an aide, but I did the Medicaid application process (totally awful), and my mom is now in a managed long term care program. They did health assessments and said she qualifies.  She gets meals delivered and paid for by Medicaid, incontinence products sent, and home health care 26 hours a week.

What do you miss?

I’d love to take a trip with my husband. I do trips without my husband and he does without me. We haven’t taken a trip together in years. I haven’t been on vacation since 2019.

Embracing Community in Caregiving

Caring for someone else can often feel isolating, with challenges emerging at every turn. It’s important to remember that no caregiver stands alone. Behind each story of struggle and resilience is a community waiting to support, advise, and uplift. By seeking help, whether from local organizations, support groups, or online communities, caregivers can tap into a wealth of shared experiences, resources, and empathy. Embracing this collective strength not only alleviates individual burdens but also underscores a universal truth: you are not alone in this journey of caregiving.