-From Wife to Caregiver: For Better or Worse
I felt anger rising up in my chest. This was a new sensation, a burning, fierce sensation. I'd liken it to a reaction after eating a too-hot Jalapeno pepper. It wasn't mad anger, and maybe it wasn't even anger at all. Maybe it was more a surge of frustration but honestly, why was it escalating into an explosion? Maybe it was worse than anger, maybe it was rage.
It had been two months short one day since my husband called from work to tell me, "Honey, a plank fell on my neck and I can't move. I'm hurt real bad". What a whirlwind of situations ensued, none of which you have any control. All you have is patience. At first everything was all touch-and-go. I was at the hospital every day but 2, keeping him clean, shaved, and bathed, watching his skin and applying treatments the nursing staff had no time for. As a career nurse, I could draw on my 28 years of experience to oversee his care.
Alot of tasks were unpleasant, but I took them all in stride. I felt good about what I was able to do for him and what I caught that the overworked staff missed. I was proud of what my quick thinking saved him from. And I was determined to hold true to the pledge I made to God when my husband was in a coma, "I'll never ask why if you'll just bring him back to me" I bargained.
There was no anger when the accident happened. There was shock and fear. There was no anger during the first few days post-injury on the hospital trauma unit. There was helplessness, dread, and insomnia. There was no anger during the stay on the hospital rehab floor. There was fatigue, sadness and anxiety. And finally the out-of-state-trip to the spinal cord rehab facility (specializing also in traumatic brain injuries). No anger, but the seeds of 'this is reality-deal with it'. I helped where I could, but always deferred to the nurses if I needed to. To be performing these tasks for my husband seemed the least I could do, and I did it with love. I never passed the buck to someone else if I was there and available to help.
I digress. Back to that day. Something was different, I could feel that an internal wire inside me had just snapped. We were in a different setting. He was "visiting" me in my room, a handicapped-accessible room located in an adjacent building on campus grounds. These apartments were set up specifically for the patients' families, as 90% of the patients were from out-of-state. It was his second visit to my little "home". And it was Super Bowl Sunday. He had been granted a four hour pass. I had planned a little "picnic" of Kentucky Fried Chicken", one of his favorites (first mistake). This was the first real outing away from the supervision of the hospital staff. It was the first day of the rest of our lives.
The apartment was not equipped with the supplies the hospital side was. I had nothing available should the need arise (second mistake). This was supposed to be home and so it was designed to simulate what you could expect outside a hospital setting. The bathroom, all the cupboards and appliances, the shelving in the closet, the drawers, and even the sink were conveniently set up within reach of the patient. Up until now, our visits had taken place on the acute side of the hospital, where all his needs were met by staff, as they taught him how to care for his own needs wherever possible. Aside from the brief time he spent two days prior looking around the apartment, this was our first venture into the outside world (third mistake).
Dinner was so normal. As the choirs from the various branches of the military were finishing the "Star Spangled Banner", I was cleaning up. My husband was experiencing what would be his future reaction to alot of foods. He had no sensation or control, so it took a half a minute for both of us to realize that he was moving his bowels. Trying to resolve the problem was one thing. But when there is no resolution except to let it play out, that is another. As it unfolded, so did my helplessness, frustration, and especially anger at the unfairness of the situation. My husband wasn't supposed to poop his pants and I certainly wasn't supposed to clean it. This was Super Bowl Sunday!
Back to the anger. Looking at the giant mess, I felt the rumblings of the urge to smash my fist through the big glass mirror and cry and yell and scream. I managed to suppress the urge and held back the question "God, why is all this happening" because there was the pledge. Suppressing all emotions, I slipped into my nursing mode and tried to take charge. We got him on the bed, and with utmost care to be as neat as possible, I began to clean up the mess. This was not your ordinary, run-of-the-mill bowel movement. This was a runny, down both pant legs, and up the back of the T-shirt bowel movement. It was not like diapering a baby. This was a 200 pound man. This "baby" could not turn side-to-side, could not move or bend his arms and legs without going into major spasms. I cleaned him up so the offensive agent (stool) would not bring on any skin problems. I did it without equipment or supplies or gloves (YUCK!). I was still in control as I made my way over to the hospital side to pick up clean clothes and supplies for future occurrences. It was when I returned and found that the same thing had recurred that the demon was unleashed. My heart broke for this big, strong, hulk of a an who now lie helpless and dependent, a prisoner in his own body. A man lying in his own excrement. Yet overshadowing my empathy and compassion was something else. Something cruel and nasty.
This tempest inside my head would reach huge proportions that day. Not since early childhood had I felt such frustration, helplessness, and pure anger at a situation. The genie was out of the bottle, or should I say monster. I ranted, complained, wept, cursed, and although I did my duty gently and with love for him, I hated this situation. I ended up on the floor in a puddle of tears. With him clean, cozy and tucked in to watch what was now the 3rd quarter of the game, the tears came. The wall holding the emotions in melted away, and when that was over, waves of guilt washed over me. I knew I could never make it up to him. I was not acting like the person I wanted to be, the person I had thought I was. That patient, tolerant, compassionate professional who never let them see her sweat.
Shame on me. Shame on me. Shame on me. I am able-bodied as they say, up and about while he lie paralyzed from the chest down. I could sit up straight in a chair, walk, pee without having to stick a tube in my bladder, move my bowels in a controlled fashion. What did I have to complain about?
It was not to be a one-time occurrence. That first time opened the floodgates and there was no turning back. Despite all that love and sorrow and compassion, when the big fuse lit due to some trigger, the monster was out and my mind would go into the "ugly zone". Once in the throes of the spiral, I couldn't make the thoughts go away. I could pray, count to ten, take deep breaths, focus on something else...nothing worked; the rage would spill into my consciousness and my brain would be full of rage. Never at him, but at the situation. The more I would hate myself for my behavior and try to suppress it, the worse it would erupt the next go around. Repulsion and despair teamed up with the rage and frustration. There were lots of tears. I withdrew from life.
As things progressed, the next step was to move us to another building where we would share a room. This also meant that all responsibilities now belonged to my husband and I. And although I would be okay to a point, certain things would trigger the despair. There seemed to be no way to internalize a pleasant acceptance of the repugnant tasks I was required to do.
My past was coming back to me. A big part of my home care experience included visits to homes of couples in the situation we were now in. Over and over I had bargained with God, "I could never handle this, please God, don't ever put me in the situation these people are in." I was referring to the spouses/significant others of the patients I met who were in my husband's current situation. Nine out of ten times the patient was a young male. Most of the spinal cord injuries were related to motor vehicle, diving, horseback riding, construction, hunting, skiing, or falling accidents. Knowing myself and my limitations, it baffled me that God would do this? Surely He meant for someone who could handle it to be around a helpless individual who already had his hands full of problems. How could I help if I was going to be angry and verbally defensive, stomping around, ready to explode into a full-fledged tantrum which ended in a melt-down?
My husband was going through his adaptation and dealing with plenty. He pointed out that he didn't have enough energy to do that and tend to my feelings. His plate was full he said, and I was on my own. And according to him, I was doing a very poor job of standing by my man. Instead of feeling gratitude for what I had been doing to help, he was angry that I was not doing more and not loving what I was doing. He would comment, "this happened to me, and now that's happening to you. You don't like doing the bowel program, I see it on your face, you have no coping skills, why are you crying, the staff thinks you're nuts." If I would groan when I would have to roll and lift, having a bad back myself, he would call me on it. No coping skills. No coping skills. I am a bad person. I would think these things all day long.
The staff was moving us into the same room was really the straw that broke the camel's back. I was going to be responsible for his bowel program. He would sit on a potty chair that I would pull over the regular toilet commode. The toilet was situated directly opposite a full length mirror. Every expression on my face was recorded and reflected right back to him. I would sit on the floor next to the toilet commode. He could see my facial expressions of repugnance as I inserted the gloved tip of my index finger into his rectum in order to pull poo from inside the anal cavity. With enough stimulation, maybe, God-willing, the bowel movement would occur spontaneously and the bowel program would be finished for that night. That was rare since his body had not gotten used to this new method of waste disposal. For me, the program would last forever. The pieces of poop would plunk into the toilet. With the bowl so close to my head, the splash it generated would hit my face and hair. Very repugnant. I would end up crying and grimacing through the entire thing.
The transfers from chair to bed and back were brutal on my back. So was turning him, struggling with his limbs to get his clothes on, and pulling him up higher in the bed. As we progressed enough to be turned loose on our own, a new task was added: dissembling and reassembling the wheelchair to lift it into and out of the car. The weight limit for my bad back was 3 pounds and the chair weighed 35. Every lift sent lightening rod pain to my lower back and down my hip, butt and leg. I had no choice but to ignore the restriction and wreak havoc on my back. We went back and forth every day......
Him: "I'm the one suffering all the pain and inconvenience, what are you complaining about, you got the easy road?"
Me: "Because you have yet to look at me and say, gee, thanks hon, where would I be without all your help".
Him: "Help? You only do it because you're forced to. You don't enjoy it".
Me: "Enjoy poop? I don't think I am the exception to the rule here. I don't know anyone who would smile during that task!"
Him: "All I know is I don't have energy to care about how you're feeling, I gotta take care of myself."
Me: "Oh yeah, what if the tables were turned? Would you be there for me?"
With great therapists and hard work on his part, he regained large and fine motor skills of his arms and hands as time went on. To us, this was a miracle. It gave him independence and it freed me from the task of the bowel program. He was using adaptive equipment to accomplish that (invented by a pure genius). As he grew stronger he learned to transfer himself using a sliding board, wiggle himself around the bed, pull on his own clothing, and more.
Four months after our admission, we were discharged and ended up back home. Now we had a whole new set of problems, but those are for another day. The pattern continued where I would have break downs and cry, and he would point out how weak I was and unable to handle things. He even dismissed my good works that were a part of my career before I knew him, making statements like "you must have been a horrible nurse", and labeling me "Nurse Ratchet".
The distance between my husband and I grew. He was trying to adapt to life from a wheelchair. I was self-loathing with a great negative internal dialog running like a tape through my head. I decided to see a counselor to try and figure out where the feelings were coming from. I told her I was sure I was a bad person. I gave no excuses for my bad behavior. I clearly was a weak individual with no coping skills. When the going got hard I fell apart. I had no tolerance after all and was not the tower of strength I was portraying to the world. Ten good things I would do to help my husband would be toppled by one bad episode with the monster.
After months of twice-weekly counseling appointments, I began to discover some things. First of all, the entire rehab experience had been about the patient's adjustment. The caregivers only existed to take on all these responsibilities but were never allowed to examine any negative feelings about it. Because all these feelings were bottled up and shameful to speak of, they stayed secret. There was no place to vent. No one to talk to. No light at the end of the tunnel. There was never an "atta girl" or "atta boy" from anyone. Without any structured support from staff or even a support group for family to attend on their own, the stress built. With no warm fuzzies to keep the motivational fires burning, the turmoil increased. Even a grown-up requires positive feedback.
I recognized next that I was rebelling against having to take on all the unpleasant nursing tasks that were such a big part of my life for such a long time. I thought I had left those tasks behind. I did not want to be my husband's nurse, I wanted to be his wife.
And so the dirty little secret stayed hidden: you resent your spouse, all these new tasks, this new life and just how little attention you were receiving for YOUR pain and suffering. After all, you had lost your old life as well. Please, let's rewind the clock a few months and get back to how it was.
As I calmed down, things settled down, but the distance between my husband and I grew even more. We seem to have fallen into a pattern of co-existence. It isn't easy, I won't lie. Where I once had a husband I now have a patient. Nothing can be done without extensive planning. There is always the chance of an accidental bowel movement occurring on an outing. And many places lack the accessibility the ADA spelled out in 1990. I never did figure out what brought the monster out, but he's been dormant now for a long time, and I do everything to keep it that way.