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I wrote this article for a nursing site: Allnurses.com. It was one of the top four articles read that summer!! It was also shared on Nurses Rock on Facebook. I was so thrilled it reached so many people!!

Source: I Had No Idea!

Often nurses have little comprehension of what a family member goes through unless they have experienced it themselves. I received a thorough schooling in this field several years ago. This may have a few details that may upset those with squeamish stomachs. 

Responsibility, Loneliness and Fear

My husband, H (now deceased) needed a “minor” laparoscopic surgery several years ago. But we had no idea what was going to happen from the first day on! 

H. was scheduled for a laparoscopic polyp removal after a colonoscopy failed to reach the tissue for biopsy. My husband was a very obese diabetic, who had recovered from a Wallenberg Stroke four years before with only a residual weakness in his balance center. His returning to his job four months later demonstrated great determination and strength of character to endure the rigorous therapy required to achieve this recovery. These qualities helped him later as you will see.

We arrived in the pre-op area early where H was prepped for the surgery. I watched as the staff rolled my husband of 35 years away from me into an area where I could not go. I had been his advocate and caregiver after the stroke and felt very protective and responsible for him. I felt so helpless and anxious for his future now. The thought that surgeons are human and can make mistakes hovered in my mind.

While waiting for our son to arrive I felt so alone and helpless. As soon as he arrived I felt his support shoring up my strength and calmness.

A family member needs someone to help them spend the long hours that tick by so slowly during a surgery and recovery room care of a loved one. They don’t know if there will be complications. Encourage them to call someone if they are alone. Regardless of years of experience and understanding of how things go in the hospital, I felt very alone until M came.                         

  Anxiety: Potential Complications

So we waited. M, our son, was concerned that they might not be able to inflate the weight of his father’s abdominal adipose tissue for the laparoscopic surgery. Sure enough the surgeon came out and told us they were going to have to make a mid-line incision in his abdomen to get to the polyp. We understood and gave consent.

Soon the anesthetist came out and told us that three different anesthetists had been unable to put a central line in my husband’s neck because it was so short and obese. I gave consent for a PIC line.

Stress was mounting! What else could go wrong? What if he had another stroke, what if he had more complications? Even with information given to the family, anxiety can run rampant especially when there are already complications.

We soon found out about complications. After his surgery which actually went well enough considering, there was no bed in ICU, so he was placed in CCU overnight for monitoring while on an epidural drip.

 Exhaustion              

His O2 saturations dropped from normal in the mid 90’s to the 70s so he needed oxygen. He had a nasogastric, stomach, a tube inserted into the nose down to the stomach to keep the stomach empty and was supposed to be using his CPAP machine for his severe sleep apnea. Trying to fit a CPAP mask over an nasogastric tube was impossible. So we kept the oxygen flowing and raised his head slightly.

I had been an ICU/CCU nurse for 17 years and didn’t mind helping the nurses in the unit. During the night in a confused state he repeatedly removed his oxygen mask. So about every 15 minutes the O2 saturation alarms declared his dropping oxygen level; I would hop up quickly and put the O2 back on his face. Finally in exasperation or desperation I ordered him to put his oxygen back on! He glared at me and said, “NO!” and removed it again!

 I am a very kind, polite and nice person, but was severely sleep deprived, had lots of stress, and worry that day. I said something I would never say normally.

“Fine! Take the oxygen off! When you pass out, I’ll just put it back on again!” 

I believe the nurses realized how exhausted I was and told me they could watch him so I could sleep. Yes, people do not behave normally when they haven’t had enough sleep and are stressed out! Ask for a chaplain to help the family member be realistic about what they can do and how much sleep they need and make them leave for a while.

Need For More than Reassurances

Please deal kindly and compassionately with the family’s irritation or anger. Remember how many times someone has told you, “Don’t worry, things will be fine.” But they weren’t? Words don’t help much.

Allow the family to express their fears to help them. It helps just to know someone is listening. Remember they are turning their beloved over to doctors, nurses and staff who they have never met before, who may be very busy, and who may not understand the patient’s requests or needs.

Then there are the “What ifs.” “What if he develops another problem?” “What if he won’t be able to go back to work or his hobbies? What if….?” Believe me there are many imagined “What ifs.”

That night one nurse did something I will never forget. My husband liked to be cold so there was a fan blowing on him. I like to be warm but I wanted to see him and him to see me at all times. So I pulled the recliner to his bedside and faced him.

 One angel brought a pile of heated blankets and without being asked to literally tucked me in! I never felt so cared for since I was a child! She understood and was so kind! I slept some after that.

 If you can, take time to listen or offer a small kindness for the family. Offer to call their pastor, the hospital chaplain, or the supervisor.  

 Advocacy and Responsibility

After a couple of nights the epidural was removed and the doctor ordered Percocet two tablets every 4 hours for pain. I know the doctor was trying to keep him comfortable and considering my husband’s size and history of back surgery and sciatica he ordered a large dose. The thing he did not consider was that my husband was narcotic naïve.  (Meaning he did not use narcotics or hadn’t in many years.) 

After one day of Percocets he could not sit up. He slept all the time: drank very little, still had IV fluids and ate nothing. So on day three the doctor came and told my husband in no uncertain terms that he “had to get up.” The doctor’s tone of voice was the one they use when they are being firm with a manipulative or lazy patient. I was a bit upset that he assumed that H was lazy! But I knew something else had to be done.

Since I knew H was not lazy, I began to worry that he might have had a second stroke.  After several futile attempts by the staff to get H up, I spoke with the hospitalist that night. My husband had a high tolerance for pain, was very independent, and absolutely not lazy. I had to be his advocate.

The hospitalist decreased the Percocet. As H came out of the drug induced stupor he started acting like himself. He refused any more pain medicine as soon as he was lucid enough to understand what had happened. He related how he had been having hallucinations, confusion and terror attacks!

Finally he was moving around and helped staff get him up. He preferred to have pain rather than losing control of his own mind. It took physical therapy three weeks during his stay and after his discharge to increase his strength to near normalcy. 

Fears

Being a nurse I know and understand that doctors and nurses are people and they make mistakes. We all do. But when my loved one has so many problems and complications I could not help but worry about more mistakes or misjudgments being made.

Plus there were always the questions that caused fear: How long will he need to recover? Will he be able to go back to work soon? (He loved his job.) I knew he had lots of sick time saved up and had a good stable job but some patient’s don’t. Some families may be very anxious about how to pay for the hospital stay plus the tests, IV fluids, lab work, radiologist bill and so many bills for so many treatments. Get them someone from case management to help them navigate this sea of bills they will receive.                                 

Reality: Complications                         

After 11 days for what should have been a three day stay, the staples were removed and H was discharged. But that is still not the end of this story.

Three days after the staples were removed, it was evident that his abdomen had not healed well. The wound dehisced in four places. The largest area was a tunneled wound 1 inch by 1 ½ inches and two inches deep in the middle of the incision. 

It took four months for the areas to heal. I cleaned and packed them twice a day for him. Imagine the stark terror of a non-medical person when they see their loved one’s abdomen opening up and then having to treat it.

Conclusion                                  

So family members need their own nurse? Well, not really. They just need lots of understanding and compassion from the ones caring for their loved one. We know nurses cannot do everything. When you cannot help in these areas ask for help. But try to understand what the family is going through.

Remember, “Walk a mile in someone’s moccasins before you judge them.”  A lot goes on that we don’t know about in the family’s mind.