The day my husband died

This story was originally published on October 23, 2023.

My dear, sweet husband, Robert, has passed away. Our story, our dementia journey, is incomplete; there is so much more to share. But in today’s story, I’ll continue the chronological unspooling of our lives and tell you about Robert’s last day.

Robert’s last day wasn’t easy. I wish I could say it was. That’s all we want for our loved ones, right? That their transition from this life will be peaceful, that the day is faced without fear or longing? We hear stories of people dying in their sleep, beatific expressions on their faces. This was not entirely Robert’s experience or mine. This was not an easy story to write, and I don’t believe it will be easy to read.

A dreaded cough

Robert developed a cough in the third week of September. Coughs among the frail and bed-bound are fearsome. They can be rooted in something as simple as a head cold or they can be the harbinger of the end drawing near. 40% of Frontotemporal Degeneration (FTD) sufferers succumb to aspiration pneumoniaAspiration pneumonia is a type of lung infection that is due to a relatively large amount of material from the stomach or mouth entering the lungs.. This was our worry, that Robert was on the precipice of his final decline. (And if I’m being honest, my worry was laced with a bit of hope that Robert’s life, this struggle, was drawing to a close.)

But his lungs were clear. His hospice case manager, a kind, loving nurse named Carole confirmed over several days that his lungs sounded good. The cough must be the result of a head cold. Robert was prescribed cough medicine to make him more comfortable.

More than a cough

Eventually, though, the cough suppressant stopped working. Heard through a stethoscope Robert’s lungs were “ronchi.” The sound of ronchi lungs is most often compared to the sound of snoring. Ronchi sounds are produced when something, usually fluid, is blocking the airways and is shifted around in the act of inhaling or exhaling. Robert’s lung sounds didn’t present with the wheezing, crackling, and rattling that can mean an infection, but rather with the persistent sound of labored breathing. Snoring. Inhaling. Exhaling.

Carole spoke with Robert’s hospice doctor when his lung sounds changed. Robert’s doctor recommended that he be prescribed Tessalon Perles (benzonatate) an antitussive (cough suppressant). They also recommended that Robert be started on a course of prednisone to reduce the inflammation in his lungs. 

Should I treat him?

Initially, I agreed to both medications. Upon reflection, the prednisone prescription just didn’t sit well with me, but I couldn’t pinpoint why. And I felt like I couldn’t make the decision alone without additional guidance. I spoke with our daughter, Maddie, a nurse. She spoke with a hospice nurse friend of hers. I called my friend and neighbor who had lovingly suffered her mother’s long illness.

I reached out to a nurse practitioner friend of mine. Laura left a message while Maddie and I were on the phone. I gave her a call back and repeated what I’d shared with Maddie. Laura paused. 

“How are you feeling, Sharon.”

“I’m afraid. I want to do the right thing for Robert. What do you think?”

“Whatever you do will be the right thing, because you are making the decision with the best of intentions based on what you know today. You love Robert.” Pause. “I saw the photo you sent me.”

“How do you think he looks?”

“Sharon, he is dying.”

No one, given Robert’s condition, believed that prednisone was the best course for him. I opted to treat with just the Tessalon Perles and not the prednisone. 

There were two reasons I rejected the prednisone. Firstly, I’ve taken prednisone myself and have found that while it effectively reduces inflammation, it can also cause agitation and sleeplessness. Robert already had trouble sleeping. I didn’t want to add to his burden. 

And secondly, as this may be harder for some of my readers to understand, I did not want to offer a potentially curative medication. I reasoned that whatever was going on with his lungs was a natural process and I didn’t want to interrupt that.

Refer to the care plan

I had a comfort-care only POLSTThe Physician Orders for Life Sustaining Treatment (POLST) form is a written medical order from a physician, nurse practitioner or physician assistant that helps give people with serious illnesses more control over their own care by specifying the types of medical treatment they want to receive during serious illness. in place for Robert. His care plan and every decision we’ve made have been examined through that filter. “Is this medication being administered to make Robert comfortable, or is it being prescribed to do more than that? Will the medication fix him, or will it simply allow him to pass without pain?”

Decisions about comfort care are rarely straightforward.

Minding our routine

My usual habit was to visit Robert three days each week, but with the change in his condition, I visited every day that week. I wanted to ensure that he was not in pain and that he knew he was loved. By the time Friday came around, Robert seemed stable and at peace.

A friend and I traveled to San Francisco for the weekend. We planned to see the Kehinde Wiley show at the de Young Museum before it closed on October 14. Saturday unfolded as a beautiful day. The sun was shining, the marine layer lifted early. It was the last weekend of Fleet Week in the City. The Blue Angels had been tracing precisely synchronized loops in the sky since Friday. Traffic was bad, but the neighborhoods were bustling with people out and about in the wonderful fall weather.

On our way to a street festival on Saturday morning, I got an urgent call from Robert’s care home. Fatima, the lead nurse, was calling from Robert’s room. He was coughing uncontrollably and frantically asking for me. He was shouting out numbers (he never stopped counting). I pledged to get back to Petaluma as quickly as possible. Robert challenged Fatima with a lucidity he hadn’t exhibited in months, “Is Sharon really coming? You’re not lying to me?” Fatima held the phone to his ear. I assured him that I was on my way.

Racing home

We turned our Uber around to get back to our car. I called Maddie and asked her to get to Robert as quickly as possible. I asked her to please call her brother; Jackson needed to know what was going on. I’d be there in about an hour. Fatima had called hospice. A nurse was on the way and would also arrive in about an hour.

I felt a great wash of anxiety course through me, hitting every part of my body. My limbs felt heavy, numb. I couldn’t seem to think clearly. We headed north.

I arrived at Robert’s care home a few minutes after hospice nurse, Tabitha, arrived. She had just begun her ministrations. Robert was panicked and thrashing with slow unsteady movements. His entire chest was heaving with each respiration. His skin was a creamy waxen color, his fingernail beds were bluish. His usually bright blue eyes were flat, sunken orbs. He was frightened. I was heartbroken for him. Could he see us?

A sudden change

Overnight his body had forgotten how to swallow. He could not clear the saliva that all of us secrete constantly and swallow reflexively. The saliva was accumulating in the back of his throat. His voice was rattling, wet, and noisy. Demons had been unleashed on this poor, sweet man. He was crying out in pain, shouting numbers, “749, 750, 751…” and struggling to take each breath. Tabitha said gently, “Robert’s oxygen saturation level is 47. This is not enough to sustain life.” But he is squeezing my hand, I thought. Surely she is wrong?

Morphine is your friend

Most people don’t realize that morphine provided by hospice is usually delivered orally. Robert couldn’t hold the medication in his mouth. Only tiny drops were absorbed through his cheeks. After 30 minutes he was still very agitated. He threw up. A slow, weak dribble, but it cleared the saliva from his throat and he could breathe a bit better. His respiration rate remained high at 40 breaths per minute. Normal is 12-18. His chest still heaved and he had not calmed down.

Maddie and I stayed with Robert for 2 1/2 hours, working side-by-side with Tabitha to make him comfortable. With Maddie’s help, Robert was gently catheterized so that his medications could be delivered through his rectum. A second dose of morphine and a dose of lorazepam were administered. Robert was still not at peace. Another dose of morphine was administered. Robert finally began to rest. His oxygen saturation was back to 86, still low but not imminently life-threatening.

Tabitha had arranged for a prescription of phenobarbital to be prepared for Robert. His discomfort had been so extreme that none of us wanted him to endure that again. Maddie and I were tired and hungry. We’d both arrived around lunchtime and hadn’t eaten. Robert was sleeping, his breathing was less labored. We decided to head home for a while each in our separate directions. Me across town, her a 1/4 mile away. 

Resting

We paused in the sunshine at the bottom of the driveway at Robert’s care home. Both of us were emotionally spent. We didn’t have much to say. Without food or water, Robert would live just a few days or perhaps a week. We didn’t believe this. Robert had rallied so many times. He hadn’t even arrived at the worst of end-stage dementia. He still remembered us most days. He wasn’t leaving us anytime soon. We were sure of it. 

Tabitha continued to work on Robert’s behalf. The pharmacy would be closing soon. She left Robert to fill the prescription for phenobarbital and returned to stay with him until 4:45 pm. At 6:30 pm she left a voicemail that Robert had been given the phenobarbital and was resting peacefully. His respiration rate had returned to a more normal level, he was no longer struggling to breathe. But she was not able to get a reading on his oxygen saturation level; his fingers were cool. The hospice team would discuss inserting a urinary catheter the next day to help with voiding his bladder.  I was so relieved. I could exhale. Tomorrow we would coalesce around this new normal.

At 8:20 Fatima called. Robert had died.

The emotional upheaval that has followed Robert’s passing has been extraordinary. One day I’ll have the distance and fortitude to share it with you.