Bare Foot Visit

I have been told that when treating delirium, you should look for reversible causes first.  In other words, before adding in lots of medication, try to see if a simple solution exists.

One such reversible cause for delirium is hypoxia, or not getting enough oxygen to your brain. This can be a very simple thing to fix for some patients; just add oxygen.  However, this can be more difficult when the delirium is at play.

Such was the case with Ronald.  He had been diagnosed with lung cancer, and had spent a few days in our hospice home to give his disabled wife, who was also his caregiver, a break.  Ronald was just starting to show signs of the roller coaster ride of up and down moods and confusion that can happen as the body slowly begins to shut down.  He was a handful, and the staff was beginning to feel they needed a break as well.

When the nurses took him to his rural home 15 miles away after his respite stay, they made sure to alert his wife of some of the changes we were seeing, especially the new delirium and confusion that was worse when he didn't wear his oxygen. They bid he and his wife farewell until the following day's scheduled nurse visit and departed with relief.

I need to mention at this point that it was winter in Kansas.  We had recently had several inches of snow, and more was on the way.

Several hours passed of peace and quiet at the Hospice House, when all of a sudden one of the nurses heard a banging sound at the back door.  Confused on who it would be, she made her way to the back hall and opened the door.  As a blast of snow and air hit her, she squinted in the bright light, her draw dropping as she took in Ronald standing in the snow in sweatpants and bare feet.

"Nurse, you have to come now!" He said in a panicky voice. The nurse had to prioritize the multiple shocking things in front of her.  Ronald needed help, Ronald had no shoes on in a snow storm, Ronald had somehow arrived from his home 15 miles away.

That's when the nurse noticed Ronald's old pickup idling in the back parking lot. She blurted out "Ronald, what in the world is going on?" which seemed to sum up all of her concerns.

"I had to get here, my oxygen tank is broken at home.  I can't get it to work, and I absolutely need oxygen now. YOU need to come with me back to my house to fix it" Ronald explained.

Here's were delirium's irrational side comes in.  Instead of having his wife call the nurse, or he calling the nurse to work thru the problem, Ronald had run to his truck in his bare feet and driven through a snowstorm to come get a nurse.

There really was no way to persuade him of any other solution than having a nurse follow him back to his house to figure things out.

The nurse drove in her own car, and followed to make sure Ronald was safe as he made his way back to his home.  Even back at his house, he spoke in a rapid, paranoid way.  She helped him inside, and he led her to the troubled oxygen concentrator.

"You see, there, it's not working!" Ronald said flipping the switch on and off in exasperation. The nurse immediately glanced to the wall were the cord to the concentrator lay, unplugged. She calmly walked over, plugged the machine in, and the machine's whirring sound began again.

The remedy to Ronald's delirium was oxygen, which was readily available, however it was the delirium itself which prevented him from being able to help himself.

Without Work

Frankie had worked as a barber in a small town for over 40 years.  It's important to note that in a small town the barber shop has its own sub culture. Men of all ages, from all walks of life and socioeconomic status, enter on equal footing.  The barber with blades in hand, is ruler of the roost siphoning in information from gossip, secrets, and confessions of clients. The power is all his, as the morsels he collects he can choose to hold tight to or to pass on to others.

For forty years the castle was his. Others clamored for his favor to win tidbits about others. He was respected. He was independent. His job was his life.

When they found a nodule in his lung he started chemotherapy in secret.  He had listened and passed on tales of countless other peoples cancer woes and didn't want the awe filled pity that accompanied the news.

He pushed through the fatigue and side effects, never missing an day at work.

The news came that the cancer was spreading rapidly, but he continued to ignore this reality. Finally one morning he didn't have the strength to make it to work.   With no work to go to, he called hospice.  Now he was ready to die.

I met Frankie the day he enrolled with hospice.  We talked about his life, his hopes, his disease.  I cautioned him that although his weakness and fatigue were preventing him from going to work it still appeared that he had several weeks left, if not a month or so before the end.

Word got out about Frankie's cancer, the very world of information exchange that he had controlled now passed around his own tale.

Without his job, Frankie floundered. He refused visitors, he lashed out at family. He climbed so inward into himself that he'd often ignore my visits. If anything was muttered, it would be about wanting to die.

It's as if, in Frankie's eyes, 100% of  his value was in being a barber and when that was taken away there was nothing left. No amount of medication, dignity therapy, or listening could fix the suffering from loss of identity.  It was agonizing. He laid in bed, rejecting the world for over a month before he died.

I've tried to funnel the heartbreak of not being able to help Frankie into a check up of my own self value. There's got to be balance of worth that comes from both external and internal things.

If only Frankie could have acknowledged that despite not being able to go to work, he was still a father, a grandfather, a friend, and still a barber with a lifetime of stories to be shared.

Hard Things

Families that take care of dying loved ones in their homes, go through such extraordinary things. We expect illness and dying to affect us physically, but often we don't anticipate the loss of dignity. It is left to the family members to muddle through the hard things; helping a mother eat, helping a father button his shirt.

Today as I met with a family who had brought their mother to our hospice house for the last days of her life, I was reminded of how tough it is to be caregiver and child at the same time.  Each sibling spoke of separate moments that they each had, when that final line of humility was crossed.  For the daughters, their moments came in assisting their mother to shower.  A modest and proud woman who hid her protruding mass from family for years as it slowly grew and then opened, she wept with the daughters as they apologetically helped her shower. They admitted their surprise at the effects cancer had on her body, but more how sorry they were that she was humiliated to need help from them.

Her son had been spared such intimate tasks for as long as possible, until one morning it was only he that was present. His mother's bed was wet, she shivered, needing dry clothes and sheets.  Like his sisters before, he cried as he attempted to change her, her modestly and discomfort obvious as her dignity ebbed.

These are the things we forget, when we ask how things are going at home. Is it not enough, patients must wonder, to endure the physical changes of dying and have to lose dignity as well?

To take care of a dying loved one is an extraordinary thing, often a hard thing, and always a gift that must not be taken for granted.