The Patient, the Caregiver, and Responsibilities During Big Events

The holidays bring a level of joy and excitement that we don't often experience the rest of the year. There’s the hustle and bustle of shopping for gifts, invitations to parties, welcoming holiday visitors, all sorts of exciting activities and emotions.

But for the cancer patient and caregiver, there’s a lot more to the story. Holidays, whether seasonable celebrations, or birthdays, anniversaries or other events, can bring a higher level of stress, concerns, and work for the caregiver.

Taking precautions after my husband's prostatectomy

After my husband’s first surgery, a radical prostatectomy, our kids and grandkids were anxious to see him and spend time with their dad and Papaw. He wanted to see them as well; being with family and the people who love you most has a healing power all of its own. But we had to be careful not to overexert him, and needed to be especially cautious about not exposing him to any illness or germs as his body worked to recuperate.

It was a hard decision, but when the family visitors stopped in, we banned hugs or even close contact. This was especially true during the months when he was going through chemo. (Looking back, it seems this exercise was almost preparation for what was to come during the long COVID years.)

We are also fortunate to have a bathroom on the main floor and one on the second floor as well. The main floor bathroom was designated for my husband’s use only, trying to keep it as clean and bacteria-free as possible. Everyone, including the little people, understood why they needed to climb the stairs to use the other bathroom.

Adapting to the changes

We started using what we called extreme hand washing: counting to twenty as adults scrubbed, and for the littles, singing the ABC song. It seems like this was another pre-COVID drill. Hand sanitizers were available everywhere. As his caregiver, I felt responsible to start escorting visitors to the door when I knew he needed to rest. Everyone understood and appreciated being able to visit, even if it was just for a short stay.

I had never been an online shopper but found the wonder of Amazon Prime and home delivery of almost anything you could buy. Our local grocery stores offered free grocery delivery; I simply needed to order our food on their website page. This certainly simplified a need to find someone to stay with him while I ran to the store. We attended online church services to limit his exposure to other people. Some of these are practices we continue to this day; wonderful time savers are available everywhere through modern technology.

Leaving the house

Leaving the house presented other challenges. We didn’t leave the house often, but he tired of being homebound. He felt he was missing out on family birthday celebrations, so we agreed to a few visits. After his surgery, he had a catheter for a good month or two. It was hard for him to find a comfortable position at home, much less find a way to be at ease when we went elsewhere. We traveled with pillows, arm rests, and light blankets that could be bunched up into any position to help make him more comfortable.

Since we went only to family gatherings, we felt free to establish a few “rules” up front. The grandkids who loved to sit on his lap were told they could not do so. Most understood, and for those who were too young to understand, their moms kept a watchful eye. Everyone gave him ample space so he wouldn’t be bumped. Where possible, the first-level bathroom had been carefully cleaned before our arrival and was dedicated to his use only, at least for that visit.

During chemo and also as a side effect of some medications, his appetite varied, so the host always made sure to have food that was simple, non-spicy, and easy to digest. Everyone was more than happy to do whatever they could to help him. During all visits, I watched him carefully so I would know when it was time to head for home.

Responsibility and planning

Being a caregiver brings a lot of responsibility and requires planning to make sure the patient is comfortable and safe. But I never thought of it as work, and I think most caregivers feel the same. It was an honor to be able to provide whatever I could to help my husband continue to enjoy life, while at the same time continuing to heal.