You're Not Alone: Stories From Caregivers Like You

By Maggie Cunningham tags: Caregiver, Caregiving

Sharing your story of caregiving can help you relate to others experiencing a similar journey to you. It’s not always easy, but caregivers are both proud of their care and happy to do it. We reached out to you, real caregivers, and have collected some of your incredible journeys to share with each other to connect. This is Lisa’s story from her point of view. 

I was in my late 40s when my mom first got sick. I was married with one daughter in college and the other daughter still in high school. I started caring for her after she had a heart attack and needed to have bypass surgery.  

At the time of her surgery, my husband lost his job. I call that time my dark years. I would work as much as I possibly could to make up the income. Meanwhile, I was taking care of my husband, my kids and my mom. Everybody. I was always taking care of everybody. And it was so much. I was surrounded by depression, anxiety and anger every day.

During her heart surgery and rehabilitation, Lisa would drive from her home in Lexington, Ky. to Cincinnati, Ohio where her mother was living. She would stay for several weeks at a time away from home.

It seemed my mom kept getting sicker and sicker, and the doctors thought it was heart-related. A year later, we found out she had stage 3C ovarian cancer. 

Lisa 2

My mom would have [outpatient] chemo in Lexington for a few weeks each round, and during her weeks off, my brother would meet me halfway to Cincinnati where he would take her home and care for her there.

For Lisa, the ‘off’ weeks when her mother was with her brother were often more stressful. Lisa’s mother would suddenly get sick or fall and be rushed back to Lexington.

Even though those weeks were ‘breaks,’ I never really got that time for myself. I was still on the phone three to four times a day checking, ‘did you remember to take this,’ ‘did you remember to do that.’ It was actually easier having her with me because otherwise I was worrying.

The only thing I managed to keep doing for myself was playing tennis. That was pretty much the only thing I got to do for me. The rest of the time was spent at doctor’s appointments, keeping up with bills – hospital, insurance etc. I was her durable power of attorney, so I handled her legal matters and monitored money she got from disability. 

When many of us think of caregiving, we think of doctor office visits and personal care. It’s easy to forget the hours upon hours of paying bills, going through paperwork and making phone calls to Social Security and insurance. 

I would spend hours every day on the phone, constantly on hold, but I wouldn’t dare hang up because then I would have to wait another hour. While on hold, I would sort her medications to make sure she got what she needed at the right times. When she was getting transfusions, chemotherapy, scans or visiting the doctor, which were all day events, I couldn’t work. Some weeks the schedule was light, and some weeks it was every day. 

Lisa tried to spend time with her mother as much as possible outside treatment.

Lisa

We would do things together if she was feeling up to it. I taught first graders at church, and she loved spending time with the kids. My oldest daughter would come over and play cards. We would read, craft and do jigsaw puzzles.

Lisa’s mother struggled with symptoms of bipolar disorder much of her life, but during her illness, she was able to manage her symptoms with medication. 

In some ways, that was actually the best two years of our lives together because even though acting as caregiver was stressful for me, mom’s bipolar disorder was controlled and we could enjoy each other. 

Lisa’s mother passed away after several months of fighting her cancer. Since then, Lisa has acted as caregiver for a few other family members and reflects on the time that she spent with each one. More than anything, she learned to go day-by-day. 

If you let yourself dwell, you bring yourself so down. You just have to find the best in each day.

If you would like to share your caregiving story with us, email social@kindred.com. If you are a caregiver or patient in need of healthcare advice, please call 1-866-KINDRED (546-3733, where a Registered Nurse can answer questions 24 hours a day, seven days a week.