In December 2017 my husband had his second neck fusion surgery: C3-C6 with some adjustments to C6&C7 and new hardware. The surgery went very well. But, surgery isn’t the challenge when you live with someone who has a traumatic brain injury (TBI), including all the side effects that accompany a TBI.
The true challenges begin every time my husband comes home. Every surgery, his return home is becoming more and more challenging. How? You may ask. I ask that myself. Each time we face a new set of unforeseen challenges as his brain continues to degrade at some level.
This time around I found my hubby fixated on events that happened while he was in Iraq. The fixations began while still in the hospital. The most interesting part for me was how these stories have taken on a whole new spin. Showing me just how much his memory has changed these events that took place over 12 years ago.
The morning I took him home something seemed rather off, but the discharge nurse truly felt it was the medication making him sleepy. She recommended to stop giving him the muscle relaxer and all should clear up.
Breathe, Breathe, Breathe – we have roughly an hour drive home, we can make it, I told myself.
DeWayne was hungry but finding some place open that served soft food before 10am wasn’t working. Talked him into letting me drive him home where I could cook him food.
We had to stop in to fill his pain medications first. Why doctors don’t allow this be filled prior to leaving the hospital is beyond me. Would sure make life a ton easier.
Got DeWayne home, into the house, and settled. Got Ava (the service dog) taken care of. Made some soft foods for DeWayne. He kept falling asleep while eating. There was no leaving his side while he was eating or drinking. His pain level was high. Gave him his medication, ice for his throat, heat for his back. Something still seemed off with DeWayne, the disorientation was increasing.
By the evening my rational process was no longer working. Somehow, I convinced DeWayne to go to bed. This way I could lie down too. He was up every 30 - 40 minutes, wandering about aimlessly. Disorientation was in full force, but I didn’t fully realize it. Frustration hit both of us. He was beginning to level verbal anger at me. When in bed, pseudo-asleep, his violent dream enactments were out of control. Poor Ava was beside herself for she wasn’t able to comfort her person like she normally does. In all, the night was long, sleepless, and painful, not only for DeWayne, but for myself and Ava.
The following morning, he is up early and demanding to go upstairs. All the food he asked for, he wouldn’t eat. The verbal anger was getting worse. By lunch he was throwing his soup across the room. It landed on the other couch and spattered across the floor because he didn’t want to eat it. Even though he asked for it, he was not able to verbally communicate his thoughts, his feelings, or clearly state his wants.
I was at a complete loss at what to do not only for him but for myself. Every time I tried to rest or eat, DeWayne would demand attention of some kind. When I would attempt to get close to him, he would start to slap or punch me.
I reached out by phone to the Boise VA to inform his primary care doctor of what was happening at home. The call center would not allow me through. The next best option was to send her a secure email. His primary care doctor (PCM) called me as soon as she arrived that afternoon to the VA. The PCM felt DeWayne had delirium and to call his surgeon but to keep her posted on what is happening. Called the surgeon, left a message, waited several hours for a return call.
My dear sweet sister and sister-in-law had been in contact with me all afternoon. It took a lot for me to finally admit I no longer knew what to do, for all I knew was that things were falling apart at home and I smelled bad because I hadn’t been able to take a shower. My sister wasn’t able to come over, so my sister-in-law did. I was thankful for their help. Leigh had me go take a shower while she sat with DeWayne.
I called the surgeon’s office back and demanded to speak with the nurse, who in turn spoke with the surgeon. I got the impression neither the nurse nor the surgeon understood the TBI side effects of what was happening in our home. By 6:30pm I was on the phone with the VA once more due to fear – not only for DeWayne, but also for me. Within moments the VA nurse was authorizing, without hesitation, ambulance transportation to nearest emergency room for my husband.
It is amazing the fear that overwhelmed me at that time. The self-doubt and concern started filling my head. Was I doing the right thing? Was DeWayne really this bad? Was I making this all up in my head? What is happening in our world? Clearly my abilities to think were fading as well.
Yet I mustered up the strength to call 9-1-1.
Our home filled, starting with a Payette County Sheriff’s Deputy. Closely followed by the New Plymouth Rural Fire and lastly and most importantly our Payette County Paramedics – a home full of blessings. DeWayne is a big guy, so our ambulance crew needed assist in lifting DeWayne out of the house and into the ambulance. All first responders showed the utmost kindness and respect for DeWayne, along with their willingness to take Ava home to her babysitter. Humor played a nice role while they were there. It is always nice to know his service dog is loved too.
I thanked our firemen and sheriff’s deputy, then Ava and I hopped into the truck to follow the ambulance to our local Saint Alphonsus Hospital. As I am about to drive away, there at the end of my driveway is another true blessing. Our minister and friend, Susan. She is there to go with us. She joins in the caravan to the hospital.
Metaphorically, I’m still holding my breath as we arrive at the hospital. The nurses and attending physician are asking DeWayne questions. I’m answering questions around DeWayne’s creative answers. His agitation is growing. He continues similar behaviors from home. It doesn’t take long for the attending physician to inform me that DeWayne is not going home. He will be admitted.
I started to breathe, deep breaths, release, tears begin to well up. DeWayne was going to be taken care of. Yes! Here is when I started to realize I had not fully been breathing. My chest starts to relax.
The admitting process began. At one-point DeWayne states he is walking out to walk home. Loved seeing how fast the attending physician responded and was able to talk DeWayne into getting back into bed. Next the hospitalist physician arrived. There was a nice humorous moment where DeWayne did a pirate growl at him followed by taking small swings of his fist at the hospitalist. Appropriate medications were ordered to help DeWayne settle.
DeWayne was wheeled up to his room. A video monitor sitter and a person monitor were ordered to tend to DeWayne’s needs for the evening. I was sent home to get some rest.
Early the following morning our home phone rings, the hospital CNA/husband’s monitor calls me. DeWayne is demanding to speak with me. He tells me they have released him and to come get him NOW. Yet in the background the CNA has clearly stated the opposite. I let DeWayne know Ava and I will be there soon. I eat breakfast, take my shower and get mentally prepared to go to the hospital.
As we walk into the room, DeWayne and Ava are OVERJOYED to see each other. At first DeWayne is happy to see me too until I don’t agree to take him home. Slowly the agitation begins. He had not slept much that night. He was tired. He hadn’t been eating too well either. His sister calls me. DeWayne starts calling me many nasty names. Explaining how stupid I am. That I don’t know anything. A few swear words mixed in and demanding the hospitalist bring in the dancers he promised. (that’s another humorous story for another day.)
Ava needed to go potty, providing me a good opportunity to escape. Ava and I walk around a bit. I cry. Grab some fresh air, some deep breathing, must remember to breathe today. Gather myself. Walk back in to the nurse’s station. Gather up the courage to admit that I seem to the source of his agitation, “should I go home?” Do you know how hard it is to admit this and ask this? What came next was even more amazing. All the staff at the nurse’s station stopped what they were doing to pay attention, to pay attention to me. The attention was kind, was gentle, was caring. They truly expressed their concern for my well-being. For my mental and physical well-being. They told me to go home and take a nap. To eat some good food including chocolate. To come back later that evening. They would happily take care of my husband and if anything happened, I would be the first person they called. All this was said with so much heart and was such a comfort to me.
As Ava & I were walking down the long hallway out of the hospital I heard my name. I turn around to see the hospitalist chasing me down. He wanted to go over his concerns and treatment plan before I left. The nurse’s station had let him know I was leaving. Teamwork at its finest was shining that day.
Ava & I got home. Ava and I played some ball, then I got her a doggie snack and my food together, crawled into bed, put in a movie and vegged out. Ava must have been worn out, too, for she fell asleep before I did. We slept for several hours. She stayed cuddled up right next to me the whole time, which was needed. Service dogs are the best. We both needed the comfort.
After dinner Ava and I went back to the hospital. DeWayne had also finally slept most of the day. The symptoms of delirium were starting to fade. The cause of the delirium had been figured out. Due to his possible chronic traumatic encephalopathy, the medical team feels his brain can no longer process Norco (the pain medication). DeWayne was still not stable to come home that evening. The hospitalist and I agreed one more night would benefit him. To make sure he was mental and physically stable to return home.
Saturday morning DeWayne was an “ever-changing new normal” new man. He was aware of his surroundings, kind, and showing signs of being ready to go home. Following his return home, there were many phone calls from Saint Alphonsus medical health system, along with phone calls from the Boise VA and his Surgeon’s office. Overwhelming joy of how many people cared to make sure all was starting to go ok at home. Well, ok as possible.
Little did I fully understand that things were still not OK at home. Lack of knowledge on my part played a role here. Except, now I had people watching out for us.
Our follow-up with his primary care doctor at the VA went well. That lady asked a million questions, most of which I didn’t know how to answer. This made me feel flat out dumb. Like I really didn’t know how to care for husband. Although this wasn’t her intention. Her intention was to see what education I needed and what gaps needed to be filled.
For starters, more home health services were needed. Second, after all future surgeries DeWayne would go into rehab before coming home. As the Primary Care noted, “Super Woman is still
Super, but fading and it is her (the PCM’s) duty to offer support too!”
A month and half out following surgery: Mentally, this surgery set him back greatly. Leaving the house is even more challenging than before. He has had to learn to swallow all over again. He is still on mechanically soft foods diet. The 12-year old mentality is shining through in all its glory.
Home health physical therapy makes a difference. The physical therapist keeps him moving, which is great because DeWayne can’t keep himself motivated to move on his own. The speech therapist coming into our home has been encouraging, helpful, and kind. As his world is getting smaller, we can bring the world to him in our home.
I am back in counseling, finding ways to grieve this ever-changing new normal and accepting that my life must continue while keeping his world small, safe, and secure.
We are a Military Family who is American Made!
We Reach Higher, Dream Brighter, and Hold on Tighter.