Role of a Caregiver in Spine Surgery Recovery

Author: Douglas Amend

Originally published on Medium

Apr 2, 2020

Spine surgery is a scary option to consider. There are so many questions, so much information, so many discussions, and so many possible outcomes. For the Patient, the pain you are dealing with is often amplified by the unknown, “Will I be better or worse?” The Surgeon’s does their best to answer those questions and help the Patient to get through it. Just as important as your Surgeon, your caregiver(s) has a critical role to play in your best recovery. Your caregiver is another angle (and Angel) that should not be overlooked. Whether your spouse, kids, brother, sister, or friends, they probably have as many questions and concerns as you do. I’d like to offer some insight into the caregiver side of the equation because you are going to be a whole different person when you get wheeled out of the operating room.

The big note the patients and caregivers get from their Surgeon is no BLT for months. No, that’s not a sandwich, it’s no Bending, Lifting or Twisting. If you are a caregiver, and this is the only part of this book that you are reading, think about your life without BLT. Prepare yourself to deal with a loved one in pain who is challenged with every aspect of the activities of daily living; walking to the bathroom, being able to hold it until they get there, using the bathroom unassisted, showering, getting dressed, cooking and feeding themselves. Assuming you are a caregiver living with or assisting someone close to you who is now considering spine surgery to relieve pain and/or increase mobility, I would like to share my experience in the hopes of helping you achieve a successful outcome, too. I am 100% convinced my Wife, as my caregiver, was both completely unprepared for, yet totally instrumental in my successful recovery.

The caregiver is the part that I feel requires illumination to achieve the sought after successful clinical outcome. The team you have in place would benefit from understanding the cumulative effects of spine surgery. It starts with appointments. As the caregiver, you are along for the ride making sure all of the questions are asked and answered. As the caregiver, you help with the medications and exercises before choosing surgery. Once surgery becomes the chosen option, you again attend the appointments to keep track of all the new questions. You do your best to understand and support because the pain is not yours. You make preparations at home for recovery. You plan and prepare the meals for recovery. Again, you do your best to understand the overall timeframe for being in the hospital, being off work, going to Physical Therapy, and estimating the time needed for getting back to 100%. For me, Nurses and Occupational Therapists at the hospital outlined, before discharge, things like how to set-up the home, what items are useful to have. They recommended taking a walker home a day early to test moving it through the hallways and doorways. My Wife, Michelle offered her number one recommendation to anyone caring for a spine patient, “Ask those around you for help and graciously accept the help that is offered.” The key problem here is that those who offer help do not know what to do for you, or what help you need? Michelle added, “I finally figured out that by giving a small task to each person who asked to help, giving them something to do, it made my day much better.” A couple of examples she shared were inviting one of my buddies over for lunch. After preparing some sandwiches, she now had a couple of hours for herself while we played poker. I was entertained. She had a neighbor do a weekly grocery run for our staples. She had my Dad call each day and talk for 30 minutes or so at the same time. Doing this scheduled call allowed her to take a shower knowing I would not try to get up and take care of myself.

To get in and out bed, she successfully identified the “log roll” method a couple of days after straining her back. I did this by laying on my back. I was instructed by her to raise my knees and pull my feet up to my bottom. Next, I rotate my whole body (not twisting) with my knees hanging over the edge of the bed. Then extend my feet off the bed and, in one motion, roll up to the sitting position. Doing this required her to help with my head and shoulders while letting my feet hit the floor. Unfortunately, she did not find this preferred method until the second or third day. For the first couple of days, she was doing her absolute best to “lift” me up to the sitting position. I outweigh her by a good 50-pounds, and this strained her back. Useful information, but a little late.

The challenge of taking a shower is both mechanical and emotional. Not being able to wash my lower body, again no Bend, Lift or Twist, seems mechanical. In my reality, it was emotional, too. “Seriously? I cannot even wash myself?” This feeling began to impact my mental state. A long-handled sponge purchased at the Hospital Gift Shop was hugely beneficial once I was able to shower by myself. Standing outside of the shower and not knowing how hard to pat someone dry led to the discovery of an oversized beach towel. All that was needed was to drape the towel over my head and shoulders. By just wrapping my arms allowed for most of the water to be soaked up quickly.

Driving, or better yet, not driving, also was more mental for me. It irritated me not to drive. I drove everywhere. I drove her everywhere I could. I helped drive others and now I was relegated to being chauffeured. While this in itself does lend to being a “First World” problem, it is the stacking or layering effect that will ultimately cause poor behavior later. My Daughter, bless her heart, researched and demanded I apply for a Temporary Handicap Parking Placard. I was not a fan. I yielded, because it was winter, because it was icy and because she wanted to protect me from having to walk any distance in a back brace in bad weather. Beautiful girl. Mentally, though, just pile it on for me.

My Surgeon, Dr. Anthony Hadden, commented on what caregivers need to know, from the Surgeon’s perspective, about the Patient’s condition after exiting the operating room. Dr. Hadden shared, “You also have to understand how pain affects the mind. Doug is a stoic guy. He fell off a mountain, broke his back, hiked out of the mountain for 9 hours, or whatever the heck it was, and then shows up at the Emergency Room because he looked like crap and his Wife made him go — and then talks his way out of even staying in the hospital. Pain is still going to rear its head and show up in different ways. In some people, it’s their nice-ability factor. They become irritable, cantankerous.”

Another one of the areas I experienced where information is lacking is understanding the behavior of a spine patient on opioids. No one prepared my Wife for my behavior. Being sent home in a back brace with a prescription for opioid painkillers and instructions to not Bend, Lift or Twist until an appointment the following week forced her to do speed research on “How to care for someone with a broken back?” There were many challenges; I needed help getting in and out of bed. I needed help taking a shower. I could no longer drive as I was on painkillers and not able to twist. I was on a pain management regimen of opioids that required scheduled intake. I needed help getting in and out chairs. I was bored out of my mind and in the way of daily household life. Harvey shared with me that his Wife, Wileen, was present with him at his discharge. He was so looped on the anesthesia that he completely misremembered the discharge instructions. Had Wileen not been present to hear the instructions and guide Harvey in the process, he might have made a grave mistake with his pain meds.

The medicine started with the standard opioid painkiller. Needed, definitely needed. Rest is critical and hard to come by when in pain. My Wife started a notebook and tracked every dose she administered. She followed the Surgeon’s orders to the letter. Unfortunately, there were no muscle relaxers prescribed at discharge from the Emergency Room. The Surgeon thought they had been and was surprised when we reached out four days later before our appointment for more painkillers. Dr. Hadden said, “You shouldn’t need any more. Are you taking the muscle relaxers?” We did not have any. Dr. Hadden responded immediately, “OMG, I will call them in. Can you head over to pick them up now?” Double-check your meds with your doctor if you are not getting the pain relief as promised.

My mood change was a marriage tester. Michelle shared, “I now know it was temporary. However, at the time, the severity of the mood change was noticeable. I wasn’t sure if it was from the painkillers, the anesthesia, the actual incident, or what? Doug was different. He was short and kind of unpleasant. His diet was smaller, and he only wanted bland foods. I felt the painkillers altered his behavior, but I wasn’t sure. It did not matter to me. Even though I felt generally underappreciated, I was grateful I had him.”

Dr. Hadden had something additional to add here, “I tell that to Patients all the time and their families, especially when they are in the room. I say, “Look, you’re going to have pain. You are not going to be a nice person to be around.” And then a family member usually pipes up and says, “Yeah, they are not nice to be around.” Dealing with this pain chronically definitely affects you psychologically.”

I was not able to do anything, literally not a thing. I was either in bed, in a chair or in the way. Getting in and out of a chair was no cakewalk. Again, she speed-researched and found we could rent a stand-up chair. The one for old folks. Here we go again with the mental state. We had it delivered, and it was fantastic. Made a huge difference being able to launch right into my walker after surgery. The mental dismantling of my masculinity continued. My discharge paperwork quarantined me to the first floor of our home for 30 days with instructions not to leave the house. I was bored. The activity prescribed consisted of doing laps with the walker throughout the first floor a few times a day.

Dr. Hadden gave us some insight into the role pain plays in the post-operative experience. Dr. Hadden, said, “Pain is a significant problem and we try to deal with that as best as we can, but all we conceptually think of is the physical action of the pain, we are not thinking of the psychological aspect of the pain. There are two separate pathways for pain, what is called the lateral pathway and the medial pathway. The lateral pathway is; I hit my finger with a hammer and it hurts like hell. The medial pathway is; I hit my finger with a hammer and, man, now I am depressed about it and really mad at myself because I hit my finger with hammer. That’s the emotional aspect. Most people, and physicians in particular treat the lateral pathway, the actual pain, rather than the psychological portion.”

As a caregiver, you are busting your backside to provide support. You also have your life to maintain. Worse, you are preparing meals, fluffing pillows, administering medication, helping your loved ones in and out of chairs, beds, cars and the like only to be dismissed or yelled at. Who would do that? Sadly, the hurting bird you are taking care of. Not intentionally; not even consciously. The combination of the injury, the surgery, the recovery, the pain medication and lack of activity combine to temporarily alter the personality. Personally, I was not that pleasant to be around. After the surgery I was sore and uncomfortable. Despite her over the top efforts, I struggled to be appreciative. At first, she was sympathetic. As time wore on, I wore on her. About three weeks after surgery I got up from my chair and worked my walker to the front door. It had snowed the night before and was still snowing that morning. As the snow piled up on our driveway, my Wife bundled up and pulled our snow-blower out of the garage. She wanted the driveway clear for our other Daughter to be able to come over. I watched as she struggled to blow the snow off of the driveway. Instead of being appreciative, I opened the door and barked at her that she was doing it wrong. Right? What the hell was wrong with me? She continued on, and eventually, our neighbor, who had been religiously shoveling our driveway for three weeks, came over and finished. He then let me know not to worry about the driveway. It was his way of politely telling me not to talk to her that way. He was no better prepared to deal with me. He wanted to be sympathetic yet knew that I was a burden to her.

In the beginning, and certainly during, caregiving is a thankless job. You gladly commit the time and energy to see your spouse, family member, or friend recover. What was never shared with us was just what a challenging journey this would be. Once you are in, there is no option to stop. And when the opioid medication, boredom, soreness combine to ruin your Patient’s day — you are the nearest target. I have apologized several times for the incidents I remember. I do my best to apologize for the ones that I don’t remember too.

Meeting with a surgeon is a stressful experience. This list of questions will help make sure you cover most of the bases.

1. What are the risks and complications associated with the procedure?

2. How long will the Patient be in the hospital post-operation?

3. What level of pain can the Patient expect following the operation, and how will it be managed?

4. Will the Patient need any durable medical equipment following surgery for the home? (i.e., walker, cane, crutches, toilet riser, or shower chair, lift chair)

5. Should the Patient follow a specific diet before or after surgery?

6. What should be my role in helping the patient shower after surgery?

7. What is the proper way to care for the incision(s)?

8. If a back brace is to be worn, at what times and for how long?

9. What should I be prepared to do concerning getting the Patient in and out of bed and making them comfortable?

10. What should my time commitment be during the recovery process?

One last list of ideas that I hope you will be helpful. Your Surgeon may give you this kind of information, but not all do. For the sake of your Patient, please prepare your home before surgery.

1. Clear walkways by removing rugs and cords, and rearranging furniture if necessary

2. Move commonly used items to easy-to-reach places (waist level and above)

3. Prepare and freeze meals for at least the first week post-operation

4. Consider preparing a room or location on the first floor for the Patient to sleep

5. Secure stair railings

6. Have slip-on shoes with non-skid soles readily available

7. Place skid-resistant strips in the bathtub or shower

8. Have loose and comfortable clothing easily accessible

9. Prepare any medical equipment recommended by the Surgeon so that it is ready-to-use, typically a walker

10. Large Beach Towels work best for showers

11. Having a long shoe horn and mechanical grabber will help your Patient feel empowered

12. Request a Surgeon’s note to obtain a Temporary Handicap Parking Permit

You will receive specific discharge information that includes what to be aware of if something is going wrong. Read all instructions and be vigilant in watching for trouble signs. The life of the person in your charge may depend on it.

I gladly take care of my Wife with no expectations. It is what I signed up for over 38 years ago. But to me, this surgical experience seemed different; above and beyond. Not everyone’s experience will be the same. I may have been at the low end of the spectrum with my behavior, but I have seen no benchmarks to gauge it against. Even so, I believe that recognizing and preparing the caregiver before surgery will pay dividends for all who read this article. Healing from spine surgery is a team sport, and everyone’s role is critically important for the outcome to be optimized.