A Caregiver's Perspective
Take A Deep Breath and Make It Happen
The disease eventually progressed. Over the years, Larry has had several types of therapy. His first was chemotherapy but before he could begin, we were told he needed “chemo education.” Knowing that Larry is an MD, our nurse admitted she felt a little foolish educating him. I reminded her that I’m not an MD and to please treat both of us as if we knew nothing.
In every stage of this disease, I’ve had to learn about new treatments and how to manage side effects. Much of our education has centered on leading a healthy lifestyle. To lower Larry’s risk of infection, we took a food safety class and also learned how to be safe during intimacy.
I go with him to medical appointments and have helped with personal hygiene, dressing and protecting his PICC line when needed. Every situation is different, but I can offer this advice:
Take good notes. I kept a journal, noting how Larry was during the CAR T-cell process, which was very useful for communicating with the health care team. We checked his temperature morning and night and recorded that as well as vitals during each clinic visit. Sometimes it was quicker for me to reference my notes when a provider was trying to see a pattern.
Meet with a pharmacist. This is one of the smartest things I did. He explained Larry’s meds and set us up with a dispensing schedule to ensure he got the most out of every drug and supplement he takes.
Surround yourselves with support. Despite some really awful times, we’ve experienced events that are magical because of the family and friends that make up our extraordinary support system. One evening I had the feeling that Larry might not make it through the night. He’d been very ill before, but for some reason this felt different and I was frightened. Should I call his parents and tell them to get on a plane? Should the kids drive in to see their dad possibly for the last time? I called a close friend who is also a physician. We talked through why I felt the way I did, and he made a plan to get me through the night.
Delegate. Sometimes Larry’s condition would change drastically two or three times a day. Updating everyone in a timely way became overwhelming. A good friend took on that role for me.
Be strong. While we were out of town for Larry’s CAR T-cell treatment, we had an appointment at a hospital we’d never been to. Larry was very weak and needed a wheelchair, so I called ahead to have one waiting for us at the door. Our Uber driver got lost on the way to the hospital and ended up in a residential area. He told me we had to get out because he was expected to pick up another customer. I told him to “unexpect” that customer and take us to the hospital. He finally did, only for us to be met with no wheelchair. I set Larry on a bench, told him not to move and ran inside to find a wheelchair. There wasn’t one to be found, so I asked the receptionist to please check us in while I retrieved Larry. She told me she couldn’t without him there and that I only had a few minutes before she would give our appointment away. I ran outside and told Larry to pretend I was a walker. He leaned on me. Somehow we made it to the appointment. It was one of those days when I just had to take a deep breath and make it happen.
Take care of yourself. I walk in the early mornings with a good friend while Larry is still asleep. That 20 minutes of exercise and just being with a friend is therapeutic.
Sometimes the disease is very intense and other times we coast a bit, but we never forget about it. We feel we owe it to ourselves to enjoy life. After all, we’ve been together nearly 50 years. I’m a woman in a marriage who is helping the sensitive, supportive and extremely respectful person she loves. When he hurts, I hurt. But really, we take care of each other because we’re in this together.
