When my husband Tony was diagnosed with stage 4 stomach cancer, I was lost. I couldn't even pronounce adenocarcinoma. Here we were, just another family going through the assembly line of blood work, chemotherapy and "send you home."
The next two weeks after his diagnosis were awful. I'd have to leave a message if something didn't seem right. Are these side effects normal? Do I call 9-1-1? I was all alone.
Like most people, I didn't know how to be a caregiver. No one showed me how. And like most, I researched on the internet. Debbie's Dream Foundation: Curing Stomach Cancer was the only organization specific to my husband’s disease that had a program that would put me in touch with other caregivers dealing with stomach cancer. My new fellow caregiver suggested I look into home health. I had no idea what that was, but luckily, I have many friends who are nurses.
I called a few agencies and learned so much. Not only would a nurse come to my home and teach
me how to be a caregiver, but they would take care of supply ordering and communicating with the doctors for me.
We were able to have a nurse come to our home and administer IV fluids in between treatments. It was great! We didn't have to drive two hours to the hospital to park and wait. If my husband wasn't feeling well, it was OK, because he never had to leave home. Hence, home health.
Our nurse was like a member of our family, someone I could discuss my concerns with who was seeing more than just a snapshot in time, unlike what doctors get to see. Any time I had a chance to utilize home health, I did.
After one of my husband's surgeries, he experienced wound dehiscence (also known as wound separation). I didn't know what that was. Thank God we had a home health nurse who was coming every other day, because she knew exactly what was happening. My husband was directly admitted to the hospital, received a wound VAC (vacuum assisted closure) and went home a couple of days later. Had I not had a home health nurse, I wouldn't have known what was going on. I'd have just kept packing his wound. It would have been bad.
The best part was that I was able to be a wife again. It is so easy to get caught up in the medical side of caregiving that we often forget that the person we are caring for just wants our love, not another person telling them what to do.
I could cuddle up with my husband at home while his nurse administered his fluids. I could hold my husband's hand while he did exercises with his physical therapist. Best of all, we got to do it in the comfort of our own home, in our own room, in our own bed, together.
Christy Leonard is a member of the board of Debbie's Dream Foundation: Curing Stomach Cancer (DDF) who co-founded its Fayetteville, North Carolina Chapter with her late husband, Tony Leonard. Tony passed away from stage 4 stomach cancer in January 2019, and Christy continues to advocate for stomach cancer patients, their families and caregivers in his honor. Learn more about Christy and DDF at www.DebbiesDream.org.