Caregiver Perspective: Watching, Waiting, Being Strong

It’s funny how words or pictures will bring back such vivid memories. The Cultural Arts Department at work sponsored a poetry/prose writing contest recently with the theme, “Rhythm.”  I don’t usually enter such contests but when I thought about the theme, it brought back memories of standing next to Lynn’s bed while he was in the ICU about three or four years ago.

That year was terrible. Just after Thanksgiving, Lynn was admitted to the ICU due to a urinary tract infection gone wild. He had been using an external collection device instead of an internal intermittent catheter thinking it was less likely to cause infections.  Well, he got one anyway.  He saw his urologist who confirmed the diagnosis and gave him antibiotics.  It didn’t help.  The urologist took a culture the next visit and kept Lynn on the same antibiotic.  This went on for three weeks while he got sicker and sicker; pus coming out each time he urinated.  The urologist said he couldn’t figure it out but if I wanted to call the Epidemiologist, go ahead. So, I did; turns out the urologist didn’t read the culture.  If he had, he would have seen that the bacteria Lynn had was resistant to the antibiotic he was taking. (Another good reason to push back if your care isn’t going the way you think it should.)

Unfortunately, getting the right diagnosis was too little too late.  By the time the infection was showing improvement, Lynn was not eating, extremely weak, and felt so terrible that HE asked me to go to the emergency room (He never wants to see a doctor so this was a big deal).  He told the Emergency Department doctor he couldn’t eat because he felt like he could not swallow.  They thought he might be having an exacerbation.  Into the hospital he went in order to get a nasogastric (NG) tube inserted to feed him.  Shortly after insertion, he coughed the tube up part of the way into his lung as he was receiving a tube feeding and ended up with pneumonia.  The pneumonia lead to septicemia and he ended up in the ICU with a body temperature of 90o; yes, I said 90o. Three long weeks after this admission, he was released home; very weak and still not feeling very well.

Three months later, we were back again when he just couldn’t stay awake. I had been saying for a few weeks that I thought he had sleep apnea pretty bad so he saw a sleep specialist and was put on CPAP and then advanced to BPAP. His lungs were retaining large levels of carbon dioxide even with the respiratory support. The respiratory therapist who knew him from a prior admission, let me know that his lung capacity was significantly less.  As his CO2 levels continued to rise, I was pulled aside to let me know that if they could not stop the continued elevation cycle, they would have to put him on a respirator. They called in an anesthesiologist to evaluate and he recommended a change in his setting on the respiratory support being provided.  They wanted to give that thirty minutes to see if it would work but then it was either put him on the vent or he would likely have a respiratory arrest.  The following story I wrote for the contest, describes how it was to wait those thirty minutes.

Standing beside His Bed

Standing beside his bed, watching the rhythm of his breathing, the irregular up and down motion of his chest, I think of where we have been and where we may be heading. Watching and waiting for that next breath. Listening to the rumbling of secretions he cannot clear on his own, it is strange being on this side of health care.  For years I was on the other side; the one checking the vital signs, assessing the patient for changes indicating improvement or decline.  For years, I was in control.  Now, I’m on the other side…waiting…watching…hoping…alone in his room; his strength when he has none.

I learned about multiple sclerosis in nursing school years ago, but the overview in the textbook in no way prepared me for the reality.  Before, his MS became so progressive, the rhythm of our lives was moving along, flowing with the usual ups and downs, sometimes riding high on a wave of happiness but often feeling the plummet as the wave crashed down again and new symptoms emerged.  Up and down like the ocean currents; in and out, requiring us to develop a new “normal” to the rhythm of our lives.

What is a normal rhythm anyway?  For us, it’s taking each day as it comes, each moment as a blessing of time God has granted us to be together and with our family. As the ebb and flow of the disease takes control of our lives, we adjust to a new normal; a new way of adapting; a new rhythm of life.

Standing here I pray for strength and mercy. I pray for wisdom for his healthcare team.  I pray that they will not see him as a diagnosis but as a person with his own needs, his own hopes and dreams.  I appreciate them letting me be part of his healthcare team; for them allowing me to be his advocate and for them listening to me … because I know him best.  I know the subtle changes; I recognize a difference in rhythm or color or sound that mean improvement or decline.

And I continue to wait and watch.

The doctors, nurses, therapist, and so many more come and go.  They warn me the next thirty minutes will decide; does he go on a respirator or is he stabilizing.  If he goes on the respirator, he may never come off; his lungs are just too weak. So I wait…and watch…and pray.

Do I notice a change?  Is the rhythm of his breathing less erratic, somehow less labored? 

The medical team comes in and draws yet another tube of blood.  They come back smiling, “It worked. His gases have improved.  Let’s see if he continues on this path. Maybe we can avoid the ventilator after all.”

I say a prayer of thanksgiving.  My fear that this was the beginning of the end or the beginning of a lifetime on a ventilator is fading away.  The rhythm of my heartbeat slows to match the rhythm of his breathing and once again, the normal of our lives change and we move on to the rhythm of a new normal in living with this life sentence of MS.

“Being his strength when he has none,” describes for me how I see my life in times of crisis. I carry the burden for us both.  I let him rest and fight the disease and I become his strength, doing all the things he can’t do for himself, being his defender, being his advocate, being his cheerleader and prayer warrior. That’s what I think it is to be a caregiver.

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The MultipleSclerosis.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

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