Thursday, March 30, 2017

That's Why My Wife is Here!: Why Family Caregivers Matter

Jeff recently had surgery, and we spent a couple days at a local hospital during his initial healing phase. Overall we had a very positive experience. The staff was great, and everything went as smoothly as it could go for a high-level quadriplegic on a vent.

I always stay with Jeff when he's an inpatient. His hospital stays are never a time for me to "get away" or to "let someone else take care of him." I have my own cot that I bring and set up next to his bed. Of course I always ask politely if I can stay with him. But I never take No for an answer.

I want to share an incident to highlight why I stay with Jeff whenever he is in the hospital. It happened while he was being transferred from the transport gurney to his hospital bed in the room he stayed in.

A little background first. After Jeff's surgery, he was able to be put back onto his own home ventilator. The Respiratory Supervisor came out to talk to me after the surgery to let me know Jeff was back on his own vent because Jeff had requested it and that's how he felt most comfortable. The supervisor also assured me that Jeff would be able to remain on his own vent during his stay. This was hugely good news as not all hospitals allow this. For us, this meant Jeff would have less anxiety because at this point his vent is kind of like a trusted security blanket. It also meant that the risk of ventilator-acquired pneumonia was reduced. It's not uncommon for Jeff to develop pneumonia after a hospital visit where he's been on multiple vents. 

So when a bed in ICU finally opened up, a team of nurses and staff pushed Jeff in his recovery bed up to his new room. I followed quietly behind.

When we got to the room, we were met with more nurses and staff who were preparing to transfer Jeff from the transport gurney to his bed. In total, there were about 5 or 6 people all working to make sense of wires, tubes, and the mountain of blankets Jeff was trying to keep warm under. 

His vent was tucked up snugly in the transport gurney leaning against one of the rails. It would have to be moved with him simultaneously during the bed transfer. As nurses continued to prepare for the transfer, I walked to the foot of his bed and asked, "Would you like me to help with the vent during the transfer?" There was no respiratory therapist in the room. And considering that I am in charge of this particular vent at home, I figured I was the most qualified individual in the room to handle it. 

One of the nurses turned around and said to me, "Ma'am, you can step aside and wait over there. We can handle everything."

I made eye contact with Jeff, and we shared a knowing look. This is a familiar scenario. We've been at this crossroads before, so I wasn't all that surprised to be pushed aside. As I made my way to the "over there," Jeff said to the nurse, "Well my wife handles everything at home." 

Everyone ignored him.

I nervously watched the scene unfold.

As the nurses and the assistants were all tightening their grips on the sheet in preparation for the transfer, I could see that the nurse who was now in charge of moving the vent was struggling. She gave out an "Oomph," as she tested the weight of the machine. The vent is about the size of a thick laptop, and weighs about 15 pounds. Not too heavy to lift, but still not a good idea to try to lift while transferring a patient at the same time. A dropped vent is the second-to-last thing I needed (second only to a dropped husband).

I could no longer stay put. I abandoned my time-out circle and made my way to the struggling nurse who seemed pretty grateful for my approach. "Will it reach?" she asked me, as she lifted the vent onto the waiting bed. And just as I was in the midst of explaining that the circuit wasn't long enough - that we would need to put a table at the other side of the empty bed, and while everyone transferred Jeff to the bed, I could simultaneously transfer the vent to the table - I heard a muted POP, and the vent began to alarm.

My eyes shot to Jeff's. "Are you okay?" I asked quickly. He waited to see if the vent would give him another breath. It did, but it was weak. He shook his head. Something's wrong he mouthed to me. My eyes went to his trach. The circuit was still connected. So I quickly traced the tube to where it was attached to the vent. It looked good. But then I noticed the problem. Next to the air output are three small ports that sensor tubings plug into. One of the tubes had become disconnected. "It's one of the small ones, Jeff" I said aloud so he would know I'd found the problem. I quickly reconnected the tube. The vent alarm ceased, and the machine began giving breaths as normal.

"Are you okay now?" I asked looking at my husband.

I got my answer in the form of a statement hurled directed at the nurse who told me to step aside. 

"That's why my wife is here," Jeff said forcefully.

No one said anything. 

After a second or two, everyone just kept moving forward with the transfer. This time I was allowed to manage the vent.

The transfer went smoothly. Honestly, the rest of the stay went smoothly. The staff was friendly and, despite the transfer incident, was otherwise accepting of my role in Jeff's care.

I'm not sharing this incident to call out the nurse who pushed me aside. I fully understand why she asked me to do so. The last thing these people need is a meddling, know-it-all relative all up in their business.

But Jeff's care IS my business. 

Thus far in our spinal cord injury journey, I have racked up over 1,000 consecutive days of caring for my husband. No weekends off. No vacation days. At home I am my husband's doctor, nurse, respiratory therapist, physical therapist, psychologist, and case manager. I can tell what his oxygen level is by the way his voice sounds quicker than a pulse ox can pick it up. I know what areas of his skin should be red and what areas shouldn't be. I have changed a malfunctioning ventilator circuit at 2am in under 1 minute. I know the symptoms of Autonomic Dysreflexia and know exactly what to do to alleviate them - something most medical professionals are not familiar with.

So I am sharing this incident to show that family caregivers are vital pieces of a patient's care team. Every day we are on the front lines of care. And because we aren't bound by the rules and regulations that medical professionals work under (i.e, a nurse isn't allowed to touch a ventilator, and a respiratory therapist can't change a catheter, etc.) our knowledge is both deep and vast. 

Our patient list is small. For many it's just one person. But we know that person's needs oftentimes better than we know our own.

We care for people we love. We pour ourselves into our roles - even on those crappy days where we don't want to be caregivers. Most of us didn't choose this role. And yet we work hard to hone our skills and build up confidence in our ability to provide exceptional care.

We are family caregivers.

I'm a family caregiver. 

And it's why I stay with my husband while he's in the hospital. 

Like he said, it's why I'm here. 


  1. This comment has been removed by a blog administrator.

  2. Have you kept notes on all you have learned? Seems to me you should write a reference guide so other new carers could learn from it.

  3. Nicely stated. Those last few paragraphs really sum up life as a caregiver well. Glad you were there for him and for you. Praying for continued strength for more days for all of us.

  4. I can relate. I'm I've 1500 days in now as my husband caregiver. I go everywhere with him because he's right side paralyzed AND non verbal. I don't know how many times now I saved him from problems involving staff who fail to understand we are trained and knowledgeable people.

  5. I can totally relate. when Jason had an AD episode last week, we went to urgent care to check vitals bc we couldn't get a blood pressure read at home. I asked the doctor if he was familiar with AD and he gave me a look like "who the hell do you think you are?" I forcefully asked again, explaining that "I have been advised to ask as many healthcare professionals aren't familiar with it." he said, "I'm a doctor." I said, "AND?" he then very dismissively said "take him to a hospital." thanks for all your help, doctor. fortunately, after Jason's bp went from very high to plummeting very low and him falling out ( ie fainting away) for a couple of minutes the problem resolved. not sure to this day what caused it but I will never trust the healthcare professionals to know what to do when dealing with sci patients.

  6. I have been through this scene many times. It gets tedious haveing to explain that you are their caregiver and probably know as much as anyone!