Lessons learned from Caretaking

Post date: Jul 14, 2019 10:28:14 PM

My husband Mike had a major back surgery on May 22 down in Iowa City: after 30 days in two hospitals and a rehab unit, he came home just last week. Throughout the last six weeks, I have learned to be his advocate and now that he is home, his caretaker.

Here are a few lessons I’ve learned:

First, prepare for the surgery and rehab. Here is what we did:

• Rearrange furniture to make it easier to get around the home with a walker or crutches.
• Stock up on some easy meals in the freezer or collect information about nearby restaurants that deliver
• Load up your ipads w books on Kindle and the Audible app
• Put important info on Google Keep (hotel reservations, doctors’ numbers, web portal info, list of medications, friends’ phone numbers, etc.)
• Pack some healthy snacks (almonds, animal crackers, apple slices, etc.)
• Don’t forget your chargers
• Pack comfy shoes and clothes, and take a hoodie or sweater along for sitting in the hospital, where it is typically cold.

Second, Write down your questions for doctors: they’re busy people and will only be there for a few minutes. Most of the time, you will get more information about your loved one’s progress from the nurses and other medical staff.

2. You need to ask questions and advocate for your loved one: this has been uncomfortable at times, but again, it is the most important thing you can do for your loved one when he or she is in the hospital. Take a small notebook with you and document concerns and problems – I noted inconsistencies with giving Mike his meds, confusion about the medication schedule, and actual mistakes. Iowa City changed the dosage of a pill he has taken for many years, prescribed at a higher does than is typical, but done for a good reason. Once caught, it was corrected.

3. Use the patient portals like MyChart, even though the most frequent comment I heard from nurses was the doctor doesn’t read those messages. However, after sending our surgeon an email—and doing a copy and paste into the patient portal’s message center, he called us back and answered some questions.

4. Try to keep hydrated and include a mix of healthy food and a few “treats” to get you through long days: I admit to getting hooked on Dove ice cream bars at the hospital’s cafeteria.

5. Take breaks when you get overwhelmed: walk out of the room, call a friend, or text a friend.

6. Accept help: I have had strangers walk up as I am struggling with fatigue, and trying to get my rollator into the cargo area in Allen Hospital’s parking lot. People have brought food or stopped to chat. Two friends drove down to Iowa City to caravan home because I was too tired to drive.

7. Breathe – slow down your breathing to calm yourself when you feel overwhelmed.

8. Reach out to friends and family on social media: one friend suggested that I see a counselor for the trauma I was feeling, seeing Mike in so much pain, and having to wait for pain medication. I replied, “Isn’t that what Facebook is for?” I was half joking; however, I was amazed by the support that I received. Several people reached out to me on Facebook’s Messenger with personal messages, including one friend who had undergone the same surgery. She shared her experience and it was comforting to be able to benchmark Mike’s progress with her story.

9. Thank the medical staff for their help: almost all of them are caring, professional, and want to help your loved one. However, when someone on the medical staff makes a mistake, document it and talk to someone else. A young aide at a Rehab facility tried to get Mike to lay down on a mattress designed to prevent bedsores, but it was not a good fit for someone with a long incision on the back. “You can tough it out for one night, can’t you?” She asked. No, he could not. When she did not relent, I went home in tears: later, I called back and demanded that the mattress be changed, and it was.

10. Finally, remember that someone else has it harder: I talked to a young woman on the shuttle from our hotel to the hospital, who told me her husband was in the burn unit and had lost three fingers. He was a talented musician who loved to play the piano. Another woman on the bus had a husband who was already in the hospital when he suffered a stroke. I found myself close to tears thinking about the long journey ahead of both of these women as they helped to care for their husbands.

Last updated July 14, 2019