How my husband and I changed caregiver roles after his treatment
I'm reminded that caring for one another is a privilege
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When my husband, Donnie, first became sick with pulmonary fibrosis (PF), we were unsure of the road that lay before us. His diagnosis finally came after specialized blood work and video-assisted thoracic surgery (and subsequent hospitalization). While we left the hospital with the answers we needed to begin treatment, he also came home with pain, weakness, and limited mobility due to rare and unexpected complications that arose shortly after the surgery.
For weeks afterward, he needed help with basic needs due to the pain at his incision site. Due to unexpected blood loss, he had also required two units of blood and was extremely weak and tired. Not only was his mobility affected, but he had also just begun treatment for his coughing and breathing problems, so his symptoms were at an all-time high. We had to learn how to clean and bandage his wounds effectively, but we figured it out together.
When we came home, we had to make some accessibility modifications. We quickly realized that just getting into our bed was going to be a problem. At the time, our mattress was fairly high off the ground, and the act of twisting and lifting himself into bed was nearly impossible.
Thankfully, my brother-in-law is handy with woodworking and crafted a small platform that helped to alleviate some of the height difference. Later, after Donnie had recovered from surgery and was feeling better, we moved the bed closer to the floor so it was easier to get in and out of.
Another enormously helpful thing was the availability of a lift chair. My parents happened to have an extra one that wasn’t being used and graciously offered to let us borrow it while Donnie was recovering. It really helped him avoid straining his body while getting up and down, especially since his ribs were still incredibly sore from his procedure. Our family, friends, and co-workers were so supportive during this time and helped to remove some of the burdens we were experiencing.
While I was allowed to take some time off work, I wasn’t able to be home for the entire recovery. Thankfully, I live close enough to my job that I could drive home each day during my lunch break to help with anything that was needed. Plus, it gave me peace of mind to know that my parents live just down the road and were available in case of an emergency. They were also an enormous help with our daughters, who were much younger at the time.
Taking charge
It took several weeks, but Donnie eventually healed from the complications of surgery, and his PF symptoms began to improve as he continued his treatment plan. After more than a year of unknowns and worsening assumptions, he finally started to feel much better.
While my husband still sometimes needs extra help with certain activities, he also routinely acts as caregiver for our young daughter, who has type 1 diabetes. Many nights, we are awakened by blaring alarms screaming at us to take action, and oftentimes, he’s the one who takes charge. He gently wakes her up to check her blood glucose, give her a juice box, or administer insulin.
He watches vigilantly throughout the night, ensuring that her numbers return to a safe range before falling back asleep. Despite his illness, he is still the same wonderful husband, father, and protector he’s always been. Nothing could change that, not even an illness like PF.
A couple of weeks ago, Donnie was also acting as a caregiver for me after we were in a minor car accident. Coincidentally, we used the leftover bandages from his biopsy years earlier, and he helped to disinfect and bandage my wounds. I was pretty banged up for a couple of weeks, and was thankful for the help he provided when I needed it. It felt somewhat like things had come full circle, as we had reversed caregiving roles, reminding me that we make a pretty good team.
Times like these are a reminder that caring for one another is a privilege. The circumstances involved are often difficult, but I’m so grateful that we’ve been able to navigate this beautiful, messy life together — for better or worse, in sickness and in health.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
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