How to be a Stellar Caregiver:

Lessons learned on my Unanticipated Journey to Support my Ill Husband

By Georgette King

When I found out my husband needed surgery on his neck to relieve numbness in his right arm, I was surprised at how many procedures needed to be completed prior to the actual surgery. He is diabetic and takes insulin five times a day. He also has high blood pressure. Each test for the surgery was different and usually had a requirement to coordinate, such as no aspirin for 7 days prior to one procedure or stay off this medication for 7 days before another procedure. Each pre-surgery requirement also involved tracking various doctor’s names, locations for tests, and appointment times. I was overwhelmed, and I was sure his head was spinning. He was the kind of guy that would fill up his “daily” medication in the plastic box and not think about it again until he popped the pills into his mouth.

Even though I was provided “some” written material by the physician and the nurses, I took a tremendous volume of notes. There was too much information, and too much to coordinate! I decided the best way for me to keep up with all of this was to write it down and not just rely on the handouts I received. I purchased a notebook to keep track of all of the details and keep all information in one place .

As we were finding our way through this pre-surgery process, our world changed. The results of the cardiac test were not good. Before considering surgery on his neck for the original problem, the doctors determined he needed to have both an aortic valve replacement and two bypasses. While he was recuperating in the hospital, they determined that he also needed to have a pacemaker implanted. During the COVID-19 pandemic.

How to Be a Stellar Caregiver

During this time, I learned a lot about the various tests, procedures, doctors, and hospitals and how they communicate well — and not so well. I learned a few things that made a huge difference in how well I could track his treatment while he couldn’t. I couldn’t always do everything all the time, but I did my best to keep up during an overwhelming situation.

1. Learn about each pre-surgery test and procedure that is recommended. Learn the full name and acronym of each test performed. Ask the providers why he needs this test, what will it show, and why is it important? What are the pre-test rules? How long will the test take? Does he have to be sedated? Is there anything else we need to know about the test? Which doctor will provide test results, and what are the next steps?
2. It’s important to track regular medications and keep providers informed of changes and additions. What medications needed to be stopped for a procedure? Were there any negative reactions to stopping medication? What new medications have been added, at what dosage, and how are they administered (intravenously or orally)? How long will he be on the new medication?
3. Keep track of food, which substantially affects all aspects of health. The combination of my husband’s diabetes, him not eating the usual amount of food, and effects of medications, it was challenging to determine appropriate amounts of insulin. I made a chart of his medications, the dose, what time of the day he took it, and who prescribed the medications. I kept a copy of this in my purse. I also made a chart for him to track his glucose readings and how much insulin he was injecting.
4. Stay in communication with providers, ask questions, and take notes. While he was in the hospital, I got there early so that I could discuss his treatment and took notes on what the doctors said.

My husband’s health improved once he was home. Soon he was up and walking all over the house with a walker and feeling great. Suddenly, however, his health began to change. He was so tired he could hardly sit up and could not eat. I called 911 and he went to the hospital again. They determined he had sepsis, which is a life-threatening complication of an infection. It turned out that the aortic valve that was just replaced was infected. He became seriously ill; at one point he was taking three antibiotics a day — two intravenously. He was in the hospital for 12 days. During these times, the doctors managed his care completely — but I was left trying to figure out how I can support him while he was in the hospital.

How can you help a loved one in the hospital or a long term care facility?

• Visit when you can. Share what is new that is happening that they might be interested in. Keep it positive. Don’t discuss negative family issues or what family members are saying about the patient unless it be a benefit to their well-being.
• Bring a comb or a brush and help with simple hygiene activities. Simply helping them to look better helps them to feel better. Clean their glasses, if they wear them. I actually trimmed the hair out of my husband’s ears. It made him laugh — he said it tickled!
• Bring a newspaper, book, or an activity the two of you can read together. It helps to have something to focus on other than staring at each other. We worked on crossword puzzles in between his naps.
• Watch television for short periods of time if they feel like it. We watched football. He slept through most of the game, and so did I! Having company for activities that they would normally be doing at home can make them feel good and less lonely.
• Be sure to take care of yourself. This is so important! Keep a routine so that you are getting enough rest and eating well. This is especially important if you’re the only visitor and if you are going to be the caretaker when the patient gets to go home.
• Hospital have patient advocates to assist in answering questions, addressing complexities, and finding a care center for the patient to accommodate their needs. These advocates are extremely helpful in covering all of the needs of the patient — and caregivers! — and will work with your health insurance provider and you for the right location.

The antibiotics killed the bacteria on the aortic valve, but he then had to have the pacemaker replaced. My husband spent a total of 57 days in four hospitals, and 28 days in two care centers. His kidneys failed and to date he has had 12 kidney dialysis treatments and expecting additional treatments. Eighteen doctors have attended to him.

I never thought I needed to be an advocate for my husband. I learned so much about being in the hospital, tests, doctors, treatments that are available, and various types of medication. I did not want the information that I have gained to be lost, and I hope this can help you and your loved one.

If you or someone you love is going through a similar situation, please know you are not alone in this. I hope this article provides some relief and support for you or your loved one’s health care journey. Do you have other ideas or suggestions that have helped you? Please share below!

# # #