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Lessons Learned From Caregiving

April 28, 2021
by Pat Garrigan

By: Pat Garrigan, caregiver

In most families, there is one person who typically ‘takes charge’ when emergencies happen. For most of my life, I have been a caregiver in some form, at home or from afar. I found myself being the ‘go to’ person helping family members with medical situations, visits to their doctors, assisting some to obtain financial aid when needed, helping to move them to nursing homes when necessary, and even having them live with my family from time to time. Although at times daunting, I felt it was my responsibility to step up. It just came naturally.

Nothing prepared me for the day that I would become my dear husband’s caregiver. He was always beside me supporting me every step of the way throughout our 49-year marriage. He did household chores on Saturday after we both worked full time so that I could care for my aging parents. He often took the lead in taking our daughter to her various activities while I worked or handled the current family crisis. He always cleaned my car and filled it with gas. He was my rock. He is still my rock; it’s just different.

Since we retired, we live six months out of each year in Naples, FL and we live in CT the other six. Four years ago we were in a car accident in FL, and during routine testing it was discovered that Mike had a small nodule in his esophagus. We later learned that he had esophageal cancer! The GI doctors there suggested that we seek medical help in CT since they were not as experienced in treating this aggressive type of cancer. More than likely he would need an esophagectomy (very extensive surgery). After Mike was treated successfully at the Whittingham Cancer Center in Norwalk, CT, he went for a year cancer free. The cancer returned in 2019, and Mike was then treated at Smilow Cancer Hospital in New Haven, CT. The staff there were (and still are) wonderful. The esophagectomy was performed in June 2018. After having a feeding tube for six weeks, Mike began to eat on his own with his newly-constructed stomach (part old stomach, part esophagus). The surgery was a success! After another good year, the cancer spread to various spots of his body. The good oncologists at Smilow keep him on a ‘short leash.’ He has been treated with various rounds of chemotherapy, radiation, and ablation/surgery for involvement in his hip. He currently is on his fourth round of chemo. We are hopeful. Mike is strong, brave, resilient, and a fighter. Oh, not to mention that he has a pretty devoted advocate and caretaker.

It’s not the work, cleaning, laundry, cooking, assisting Mike, being his advocate, and cheerleader that bothers me. It’s the slow, agonizing roller coaster that we both have been on for four years that has been the challenge. Watching him lose more and more weight, his inability to golf, play Pickleball, not feel well, and not enjoy traveling as often has also been upsetting at times. He feels guilty that he can’t help out like he once did. We are always nervous after every CAT and PET scan praying that he is stable. He at times is “sick and tired of being sick and tired.”

We have, however, found new ways to occupy ourselves, especially during the Pandemic. Mike is an inspiration to everyone, and has a positive attitude most of the time. We have become closer. A friend who lost her husband young said to me, “Your job is to make your husband comfortable.” So, that is my focus. Another friend taught us how to play Rummikub. We watch our Sunday church services on TV. We pray several times a day. We play “Hand, Foot, and Elbow.” We take walks and chat with friends. We Skype with our kids on Saturdays and dress in funny hats to amuse our grandkids on the video calls. When the Pandemic numbers are low, we socialize a little on someone’s porch. We watch lots of Netflix. We transferred our old VCR tapes to flash drives and reminisce with gratitude how full our lives have been. Mike taught me so many new tasks including how to deal with car maintenance issues, changing the furnace filters, and replacing the carbon monoxide alarms.

We have made new ‘friends’ at the Smilow community who seem almost like family. We have new respect for the cancer medical staff who treated Mike and dealt with all of the issues of a Pandemic concurrently.

Being a caretaker for your spouse is most challenging since he/she is your life partner. The lessons I have learned are:

1. Make your spouse your number one priority, while still taking good care of yourself. Everything else can wait.

2. Take notes at every appointment and archive all medical documents.

3. Express gratitude to your medical team, and your family and friends. Reach out to them if you need help, and to share what is going on.

4. Follow your gut if something doesn’t feel right, and call 911 or the clinic. Acting quickly could save their life.

5. Listen to the doctors. They are the experts, but do not be afraid to speak up and be an advocate for you and your spouse. Ask questions.

6. Seek support and take advantage of the resources offered to you as a caregiver including mediation, support groups, and spiritual help. These can benefit you in ways you may not realize.

7. Stay positive and always have hope. We can’t control the disease, but we can control how we handle it.

8. Every person’s journey is different, so try not to compare yourself to others.

9. Listen to your spouse and be sensitive of their needs. Don’t try to push them too fast or too soon if they are not ready to eat much or exercise yet. It will come.

10. Do encourage them to get outside when they are ready, even if just for a drive or to sit outside. Nature can be very therapeutic.

It is uncertain where this journey will take us. It’s not easy, but we cherish the time we have together, as well as with those who are important to us.

Submitted by Emily Montemerlo on April 28, 2021