The Challenges of Caregiving from a Distance

An Interview with Susan

Caring for a loved one from a distance adds an extra layer of complexity to the already challenging role of a caregiver. We interviewed Susan from North Carolina, a long-distance caregiver who managed all the paperwork and care coordination for her father while also caring for her disabled husband. Susan’s story sheds light on the emotional and logistical challenges faced by long-distance caregivers, as well as the valuable resources and tips that can help ease the burden.

Tell us about yourself

I live in Fayetteville, North Carolina and I am a property manager Monday through Friday, nine to five. I have a husband who is disabled and who has health conditions. I manage all of his doctor appointments and make sure he takes medicine. I also helped care for my father long distance. I am originally from New York, but I’ve been in North Carolina for 11 years.

What is your family dynamic?

My dad passed, but he was in New York and I spent a lot of time helping my sister care for him. My mom still lives with my sister in New York. My sister did the day-to-day care for my dad and I did the logistical and paperwork stuff from North Carolina. My brother helped my sister in New York. There are six siblings, but only three really help.

Tell us about your caregiving experience.

We decided he needed to go to a doctor to be evaluated for dementia. The doctor said it was the beginning of dementia and he couldn’t drive. He started losing strength and getting tired.

I started doing paperwork in late 2021. I got him 10 hours a week of a home health aide through Medicaid. I spoke to Medicaid and the caseworker was good and I was lucky. He guided me through the paperwork and what I needed to do. I would find the information online. My dad was approved. It was a long process and I had to go with a managed long-term care plan (MLTC).

I did a lot of reading. My family and sister were in denial. It’s really hard when you have family members who think hes making it up to get attention. I knew he wasn’t okay. He had progressive dementia. My brother and my sister thought he was making it up. It was sad that they couldn’t really understand what dementia is. There were days when he seemed okay. He would say that he just wanted to die. I’d call him every day and talk to his aide. The aide provided care during the day and my sister did at night.

In late 2021, he couldn’t walk on his own. We had to take him to the bathroom, give him showers, and from there on he went downhill. He would get more and more tired. My sister was the one physically there, while I did paperwork from North Carolina. It was hard for me because I was far, but I knew I was doing everything possible to give him the best care. We got him diapers, creams, and a hospital bed…anything he needed.

My sister had her husband, her daughters and my mom around. When I requested additional hours of home care from the MLTC, they said no because there were other people in the house. Everything came down to my sister and then finally my brother.

My dad passed away in August 2023.

How has Trualta helped?

I went on Trualta and I found information about Alzheimer’s and dementia. I was able to share the information with my siblings.

What was the biggest surprise to you as a caregiver?

The amount of paperwork and how illnesses progress so fast. I’ve watched my dad with dementia and my husband with diabetes. It’s shocking how an illness can take a person so fast.

What advice would you give others?

I would tell them to don’t give up and to look for information. There is a lot of help. Ask. Research. Call. Do whatever you have to do, but get the help. It’s out there. It’s a lot of paperwork, but it’s well worth it. I feel that I did everything for my father to have the help that he needed when he needed it. That gave me peace knowing that I did everything I could to make him feel comfortable toward the end of his life. Don’t give up. There is help out there.

Best tips?

  1. Go to Trualta.
  2. Get a Medicaid caseworker to guide you.
  3. Ask doctors. Don’t be afraid to ask questions

Do you consider yourself a caregiver?

Yes, I am a caregiver because I do a lot for a lot of people. I take care of my husband, I took care of my father, my sister-in-law calls me for information. I give people information that they need. I’m not only a family member.

What do caregivers need?

Caregivers need a lot of help from the government. Sometimes it’s difficult to get the help the person needs. I had to appeal to the MLTC and to the state after they denied my dad more hours. The government can do more to help the caregivers and the elderly. I experienced first hand that they’re not doing a lot. I was denied and had to appeal. They make it so difficult to get the help or necessities they need.

What has been helping you?

Prayer. I do online services at home. I listen to Christian music and sermons. That gives me strength to keep on going.

What do you miss?

I don’t miss anything. I’ve always been a helper. I enjoy doing all of this. It keeps me sane.

Strength and Persistence

Susan’s story is a testament to the strength and resilience of caregivers, especially those who handle their responsibilities from a distance. The complexities of paperwork, government assistance, and the progression of illnesses can be overwhelming, but Susan’s experiences demonstrate the importance of persistence, information-seeking, and utilizing available resources, like Trualta and Medicaid caseworkers. Despite the difficulties faced by caregivers, the support from the government and other organizations, as well as personal faith and community, can provide the necessary strength to navigate the caregiving journey. Susan’s advice to not give up and to seek out help is a valuable reminder that caregivers are not alone, and there are resources available to assist them in providing the best possible care for their loved ones.