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. 

The Art of the Transfer

One of the most daunting questions I faced after Jeff was injured was How in the world am I going to get him in and out of bed?

I mean, the man is twice my size.

While he was in rehab, a team of nurses and CNAs would march into the room every day and perform the transfer. They worked without speaking. Each one had a job. One was in charge of the vent tubes. One held his legs and made sure his feet didn't flop down when they lowered him into the chair. And the other two flanked him on his sides and would catch him and push him back into place when he would begin to melt over the side. I watched them with a mixture of wonder and trepidation. My stomach turned over at the thought of having to hire this many people to help me once we got home. There's just no way I am ever going to be able to do this alone, I thought. I remember tears of anxiety and worry spilling over my eyes when I would try to sleep.

Then one day two therapists took me into the rehab gym and told me that over the next few days, they were going to teach me how to transfer Jeff using a manual hoyer lift. Once we got in the gym, they reassured me that transferring didn't require the army of nurses and assistants that were currently mustering around my husband every day. That what I needed was training, practice, and confidence.

First, they put a sling under me, and made me lie on the padded table so they could transfer me to a wheelchair. It was the first time I experienced all this from the patient's point of view. Then they each took turns being the patient and I would help with the transfer. They taught me how to put a fabric sling underneath a person who was lying down. They taught me how to operate the manual lift up, move it into position, then engage the lever just enough to make lowering my husband into the wheelchair a smooth ride rather than a crazy carnival experience. They taught me how to pull my husband's torso forward and position my body against his so he wouldn't crumble to the floor. They taught me how to pull the sling out from behind him. Then they taught me how to do all of that in reverse. But mostly they taught me that it would indeed be possible for me to safely and confidently transfer my paralyzed husband, who was 9 inches taller and 100 pounds heavier than me, in and out of bed.

We used the manual hoyer lift for the first year Jeff was home. I performed the transfers with my mom's help most of the time. But my dad, Jeff's parents, other family members, a caregiver, and sometimes even friends would step in to assist as well. The manual hoyer lift was cumbersome. It didn't break down easily, so we just left it fully assembled. It lived in and took up most of the space in the office/junk room. Every day we would maneuver it down the hall, around a tight corner, and into the bedroom where it would do the heavy lifting of the transfer. Then we'd wheel it back. We did this twice a day, every day. The floorboards were smattered with dings and dents.

Then we had a big opportunity open up for us. We moved to a new state, bought a house, and began setting goals for how we wanted life to progress for our family. One of the first things we did in our new home was arrange for the installment of an overhead lift in our bedroom. We purchased it with the generously donated funds in Jeff's Help Hope Live account.

It was just like the overhead lift used in the rehab hospital where the mob of nurses would rally around Jeff for the transfer. But this time, it was just me. Me, Jeff, the lift, and the green sling. It was something Jeff and I had envisioned for ourselves - a milestone of progression and establishment: me being able to safely and efficiently transfer my husband by myself.

At first, that gap between his wheelchair and the bed, the gap we had to traverse every day, twice a day, may as well have been the size of the Grand Canyon. There was a lot of frustration, a lot of trial and error, a lot of learning and growing that happened in the span of that gap.

But eventually we developed a routine. And today, we're able to perform it pretty smoothly.

The art of the transfer may sound a little silly, but it is indeed an art. It's something we've performed over and over and over. And over again. My muscles have memory in them like a dancer's. My hands move in rhythm together gripping, pulling, holding - sometimes simultaneously, sometimes in succession. My feet make the same steps in the same spot on the floor every day. If I put down those sticky footprints that are used to help people learn to dance, I can guarantee I'd hit my mark more often than not during the transfer.

So I made a video of this unique dance my husband and I perform every day. I made it to give people a brief glimpse into a daily routine in our life. I made it to show what practice, perseverance, and the right tools combined together can produce. But I mostly made it for that scared, anxious, overwhelmed woman who is sitting in rehab with her injured husband wondering how in the world she is ever going to be able to get him out of bed by herself.

Here's how I do it:

You can also check out the original post where this video appears on AbleThrive!