Stephanie, 55, has been married to our patient contributor Andy for 19 years. She has three children from a previous marriage and two stepchildren from Andy’s first marriage. Her biggest concern has always been making sure Andy does not become too dependent on pain medication. She had trouble understanding his pain and his avoidance of social situations. He had had surgeries and other procedures before she and Andy started their relationship, but he was not pain free. She wanted to motivate Andy to be proactive about his chronic back issues. She found a neurosurgeon that ended up bringing Andy the pain relief he didn’t think was possible.
I’m Stephanie, and I’ve have been married to Andy for 19 years. And, I have three children and he has two. We’re a blended family. My kids are 31, 28, and 23. And his kids are 28 and 27. I’m a realtor now and in my new old age I had a business for 15 years I kept a home accessory business with a partner, and that was a lot of fun, I miss it but I love real state.
As a caregiver with Andy dealing with his pain it’s hard, ‘cause my biggest concern has always been his reliance on prescription medication. And I saw how it was affecting him in his conversations, in our relationships with other friends within our family. He’s the president of a logistics transportation company and has ten-year experience forever in that business, and is well respected but I was watching that start to diminish and his response to that killed me because he won’t take ownership.
I’ve never really dealt with pain and it’s hard to be compassionate if you don’t have that experience of it. We would have fights before we would go out ‘cause all of the sudden it will be a social situation a dinner, a party an event, something going on, he’d have to take three hour naps before he could get there, then he would wake up and he wouldn’t wanna go. And you started to see a pattern there. And then I wanted him to back up and do something about it, well let’s go see the doctor! And it was very scary for him, because his first surgery, that he had before I knew him, it was for a slip disk in his neck.
And this is when they use to do it when you’re in the cage and your bent so it was easy access. They don’t do that anymore ‘cause a neural embolism went to his heart, and he had a heart attack, and he sustained further nerve damage where his hands are atrophied and fire in his arms, and then he had lower back surgery. It didn’t help and he hand steroid injections with epidurals, he had an ablation where they burned the nerves. Nothing helped.
How did I learn to deal with this pain? I don’t think I did. I learned a little bit, I got busier, ‘cause I didn’t wanna deal with that, ‘cause more relational and I like people around me and I love my friends, I love my family, I love my husband, I love everybody, and for me to sit on a couch, if I watch one more TV show I was going to implode ‘cause that’s not who I am. And I saw anger starting to come into somebody who wasn’t angry, I was bitter.
But now when I look back, I see that, in the moment of it, even though it’s not too far long ago, I don’t think if you said, wow, you’re really angry and bitter, what? I am not! [LAUGHS] I would have denied it. Because I didn’t want to be that person. I wanted to help him do something about it, exercise, swim, there’s no pressure on that, walk, go to the gym, let’s see a physical therapist. You know, I can’t just sit there and not do anything. That was really hard for me and the more I pushed, the more he pushed away.
Because it was too painful, ‘cause when you’re in pain it is really hard to be motivated, it’s hard to be engaged, it’s hard to be in your life. It really is, and all he could do was work, cause that was kind of non-negotiable, work was it.
Pain medication is a complicated issue, and it’s so layered, I had a root canal recently. I woke up at 11:30 and I thought somebody was picking me up by an ice pick. I was shocked, how fast that was. So, of course, I leaned to my medicine man. I think it was Vicodin and then another one. And then he gave me Xanax, you gotta calm down, you just gotta try to go to sleep. Well that didn’t work. So about an hour and a half later, I said I have to go to the emergency room. And I have pretty high pain tolerance. So he gave me an Oxycodone. After that I was out. For two weeks I was taken out of my life. And I thought, if I had that, and those barely touched it. Can you imagine how he was?
But I wanted him to try to find alternative forms, whether it was acupuncture, or yoga or I don’t know, something, just try. It’s really hard, to get inside somebody else’s body and understand where they’re coming from. That hole tooth thing was a big wake up call for me on understanding pain.
His mom who was 87, 86 at the time, feisty, loved her. And she was gonna get surgery on her neck, so they found this doctor, and this very well-known hospital. I went with her, because I was concerned, that they weren’t asking the right questions and I just wanted to be there to hear. And I saw this doctor talk, and he spent so much time with her and was so good to her, that in the moment I’m like, this is Andy’s doctor.
And so I came home and I said, so Andy goes, “well you set it up, and you do this.” And just the energy to do that is huge, and I tell him all right I will. So I made him an appointment, we got his MRI’s, his scans over there, the doctor looked at him, and he got to take another look, and said I think I can help you. And I just burst into tears, I just thought, if this man can help him, but I wanted to be careful that it was not another, okay we’ll give it a try, there’s always a chance that it’s not going to be successful. And it was pretty aggressive surgery.
The team that was there, it was like this international team of beautiful people. His anesthesiologist, and it had a vascular surgeon come in because they went in through the front, so they didn’t disturb a lot of the arteries and the nerves and there’s less cutting that way. They put cadaver bone in through that way, sewed him up. I mean incision this big, turned him over, another incision as the doctor said to put in the hardware. So the screws, and the rods, and the pins and his nerves were all jumbled and it was like a nine-hour surgery.
We were there for about two weeks, we had to be there a little longer cause in the initial incision, they had found a hernia, so they just cut up a little higher, took care of the hernia, which cause huge postsurgical complications. He looked like he was 20 months pregnant, it was painful, and another doctor had to come in, and that took some time, and he was restless and anxious and just wanted to feel better.
When you’re in a caregiving situation or especially a hospital environment, you can go stir crazy. Because the patient is being cared for in IV’s and medication, and monitored, and taken care of, but I knew what was ahead of me, it was all starting to be laid out.
When we went home, it was about two and a half weeks later, it was right around the holidays, they have home health care, physical therapy, occupational therapy, but they just came in for an hour, a nanosecond is what it seemed to me. And I just had to learn to be patient again. I’m gonna be focused on Andy. He was pretty brave to go through that surgery, I thought. And so I’ve gotta walk with him in this, so I have to mirror that, ‘cause we’re a team and I really tried to reevaluate and get back on board.
I try to do everything, but you know the middle of the night when you have to go, get up and go to the bathroom or the bedpan and I’m like, ugh, that’s hard! It’s really hard, you feel bad for saying that’s hard. ‘Cause there’s basic bodily functions that need to be taken care of. He can’t do it, and I’m thinking, oh, fast-forward 20 years [LAUGHS] what am I doing? And then I thought, if something happens to me, he would be doing the same for me.
So you have to measure yourself, you have to keep it in perspective. There’s a new thing that I’m doing, it’s called gratitude. And you always find something to be grateful for, ‘cause there’s no lack in gratitude. I think doctors need to prepare you better for postsurgical issues and, I know everybody’s different, and everybody heals differently, and progresses differently, but we’re at the two month mark, the three month mark, when he was supposed to be doing a lot better and he wasn’t.
He had taken his pills, he’d fallen, I thought he’s ruined the surgery, and we would go to the doctor for a checkup and he goes, Andy, you’re doing great, you’re right where you should be. But that two to three months turned into six to seven months. And he started physical therapy, and the doctor said, you’re ready to start, but it took six months. And once he start a physical therapy, he started to feel a little better, and get the blood moving. I mean they were baby steps, but I started seeing a noticeable difference in him. So I started to see the light at the end of the tunnel.
So I was so excited he was walking with me, part of his physical therapy was a stationary recumbent bike, well he has a recumbent bike, I’m like, go ride your bike! We live in a pretty flat area, just ride it. Well I walked behind him with the dogs, and then he get the confidence and he goes, okay it hurts, but it doesn’t hurt more, and we just started evolving. It took a lot longer than we thought for him to feel some sense of success with the surgery.
Where our physical relationship was concerned, it was obviously medication and prescription medication. It affects your performance, it affects your staying power, it affects your presence, just being present in the moment, or even being creative. Cause there’s kind of just one or two ways to do it with a back problem. I was alright with that, but then what was interesting, is he started getting frustrated because that was all we could do, that certain position or that certain way, and it’s like it was like rote. But it was hard because the more it got boring, to him especially, the more he got frustrated.
We just past the year point right around Christmas and he was doing so much better. Other friends were starting to notice, like Andy’s back, there is the Andy we knew and loved, there he is. So, it’s been a year and two months, and he is excited, he’s even talking about trying to dive again, I mean wouldn’t that be great.
Caregiving is a challenge. You can be a cheerleader but when you don’t get the crowd coming back at you, you kind of lose your motivation there. You kind of get to the basics of food, nutrition, hygiene, then you kind of don’t know what else to do. I think it puts a big stress on your marriage, it really does. You almost need somebody else to come in, we didn’t have the means to do that, to help. And I think that would takes the pressure off, so you could just be there for the kindness, and the nurturing, and the love, and it’s not mixed in with wiping their rear end, or making sure that it, everything hits where it’s supposed to hit, and just your basic hygienic care, it kinda takes the bang out of your buck a little bit.
I would say to another caregiver that has been in my situation, just try to be as honest and straight up as you can on what to expect. In my situation it’s been long term, but when I look back, six months isn’t really that long for us to see any kind of success. But I would probably say get some help, align yourself with a few close friends, one or two or three, that really love you, that really understand the situation. If you can afford it, try to get somebody in there to give you a break, so you’re not so stuck in every single aspect of the recovery. Get somebody to walk alongside to you.
Life after this back surgery is great because the one thing I can say is there’s hope. Andy has hope. I have hope. I’ve always have hope, but he really has hope. We just recently had a grandchild in August, and his daughter got married in October and he married them, and it was all about so many things were going right at the time where he was feeling better. We’re having a wedding and a baby. Now his daughter is pregnant. So we’re making plans for our semblance of the future. I mean how exciting is that!