Caregiving is an emotional and sometimes lonely experience. Especially when it is a loved one you are caring for.​

A glass sculpture in the lobby of the heart hospital at KU Med Center. Something I waited under more times than I can count.

It was early in Mike’s illness that I remember telling a therapist I was terrified and exhausted. He told me that I was one of the strongest people he knew. That didn’t assuage my feelings any. The next time I saw him I told him I was tired of being strong, what were my other options. He said I could be a victim. I didn’t even have to try that on, it didn’t fit.

For me being strong was being there for everyone else. Not burdening them with my fears. Not asking for help. I was being strong for Mike, our boys, my parents, his sister, and anyone else in town who asked about him. It was exhausting and I always felt like I had plates spinning in the air.

In late July of 2014, we went to the Mayo Clinic in Rochester, MN. We had driven up there in one day so we would minimize interruption to my work schedule. Spent two days in appointments and drove home in two days. The drive home was the hardest thing I had done to that point.

Mike was not feeling well, and we were not relating at a very high level. I didn’t realize how tired I was until Thursday (we’d gotten home on Sunday) when I was finally feeling like myself again. I had taken Monday off and still felt I was exhausted. On Thursday I realized that I had been emotionally dehydrated.

Textures in the wall outside Mike’s hospital room at KU Med Center. This was the view I had for almost three weeks.

In January 2016 Mike was to have major surgery because he had a hole in his esophagus. We had been to the pre-op appointment the week before and everything looked good. Then early in the week before the surgery he started having symptoms. The physician’s assistant that we got into see called the surgeon. They decided to hospitalize him here and start him on antibiotics.

We were to leave for KU Med Center the next day and he would be hospitalized. He ended up needing a blood transfusion and we didn’t leave until late the next day. I drove in snow from Topeka on, so I stayed at the hospital even though it wasn’t very late when we got there. I was done driving in the snow. The next evening, they were predicting more snow and Mike seemed to not want me to drive back to Lawrence where I would be staying with our son. I talked it over with one of the nurses and decided to stay again.

Even though he had a feeding tube and wound vac Mike wanted to join his friend on a fishing trip. Something I helped him do.

For this trip my parents were in Texas and our 15-year-old son was staying with our 25-year-old son. The surgeon had said he’d be in the hospital for about 10 days with the surgery so that was what we were planning on. After 10 days the boys had an altercation adding to my stress level.

He was on antibiotics and they started running tests. Many of them were inconclusive or ruled things out. They sent some to the Mayo Clinic lab. One came back with the possibility that he had Brucellosis, an old cow disease. But the antibiotics they had put him on when he arrived had diminished his kidney functions, so they didn’t want to start the strong antibiotics to fight the Brucellosis without having a positive result.

Three times they said they would discharge him in the morning if everything was alright. All three times he woke up with a fever just high enough to keep him there. Finally, the last time they decided that his fevers were caused by the auto-immune process and let us go home.

The horses have always helped me stay centered. Photo by Rhonda Abell

Then the results came back from Mayo positive for Brucellosis. The doctor arranged for seven days of the strong antibiotic to be administered locally. The infusions should have taken about 30 minutes to an hour. But every day they had to replace his IV and it was difficult. They always took longer than expected up to two and one-half hours. The hospital was 20 minutes away, so I was in the waiting room (one of the reasons I got very good at waiting rooms).

During that week Mike got very weak. I thought the antibiotics were going to kill him. I remember sitting outside the house in my Jeep one day and thinking that I just wanted this to be over. I wanted him to be well again. Then I thought of the other outcome that would finish it – I couldn’t even think that way. I must go on being the strong one for everyone involved.

At that point I had passed on a combined job promotion and was in my first two months of the Equine Gestalt Coaching® program. Which I learned later would be my saving grace.

Those feelings of being tired and wanting to see the end are normal. Caregiving is hard. Set up your support systems whatever they may be.

I was lucky. Mike could do much of his own care and could still get out and do things. Not everyone can. Find help wherever it’s available.

If you’d like to talk with me about how the horses and I can help you navigate your journey connect with me here.

As caregivers we give our Heart and Soul and we wouldn’t have it any other way.

Make a Connection in the comments below.

Onward!​ Advocating For the Patient