Considerations for Families of Terminally Ill Patients

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I am in the last week of this assignment! I absolutely cannot believe it. It has flown.

I have some grand plans on my break between this assignment and an extension at the same building into September. I am headed to Spain to walk a pilgrimage called El Camino de Santiago. You may have seen a movie called The Way which was directed by Emilio Estevez and whose main actor was his father, Martin Sheen. It's this path on which I will be trekking next week!

Anyway, I am working my last week on the initial contract at this facility, which I have come to appreciate....the therapy team, the residents, many others in the building, from the nurses to the dietary staff to the housekeepers.

They are good people.

So, my work week this week is Sunday through Thursday. Saturdays are always a great day to treat patients, but Sundays are sometimes a bit tough. Patients don't always want to work on Sundays.

I walked into Robert's room today. It was my first treatment with him. By the end of 45 minutes, I was pondering how amazing it is that people with terminal illnesses are able to achieve a level of intimacy with strangers like me that they are not always able to achieve with their own families with whom they have lived and loved for years.

Robert had dialysis yesterday.

How dialysis works

I asked him about it. He was exhausted.

A word I have heard from dialysis patients often is WEARY.

Within five minutes, he shared with me that he was so tired that about six months ago, he had decided to go off dialysis and onto hospice. He could not take the strenuous schedule and the exhaustion he felt after each appointment.

Robert called a family meeting. His children could not accept it. He continued on dialysis. Because of them. Not his own needs. Theirs.

This is what so many people do. They hold on because their family members are not ready or willing to let them go. They hold on out of fear of what will happen to their elderly spouse if they pass. They just hold on.

And suffer.

I cannot judge this situation one way or another. I only know that I see so many older people suffer because they do not want to let their families down. I also know  -  and maybe this is because I work around long term care - that I would never want my parent to hold on because I didn't want them to die.

So, a note to family members of people with terminal illnesses: 

Consider letting your family member know that

• you love them!
• you do not want them to suffer!
• if they feel they need to go, you support them on their journey beyond!

Can you imagine how much less suffering there might be if we could all just do that.....

Sending Constance Beyond

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Remember my first patient who really inspired me at this assignment?
Constance, my 3pm appointment, with whom I loved to laugh during the Ellen Show...

She went out late last week to the hospital. She came back Monday with hospice services. Ohhhhhhh.....for all you who work in skilled nursing, sometimes those older folks you just love come home from the hospital ready for their life graduation.

Constance was laying still in her bed, covered only with a white sheet, white as a sheet herself, nasal canula supplying much needed oxygen to help her breathe. My own breath did a sharp intake.

"Oh, Constance!"

I could tell her life force was dwindling. Family had been called in. Most of the day, the room had been filled with family members. Two daughters stood outside the room.

I turned to them. "I just want you to know what a blessing your mom has been. I have enjoyed her so much!" I went on to tell them about what happened when we got together to prepare her arms for splinting.

They smiled broadly. I could tell it brought them some sense of relief from their grieving.  They encouraged me to go tell her goodbye.

I walked into the room. The hospice nurse aide was there at the bedside. I went to the other side of the bed and leaned into her ear.

I told her all the beautiful ways that she had touched my life. I wished her a lovely journey.

As I walked out of her room, I could almost close my eyes and transport myself to a building about 2 hours from here in which I had worked in the past, a building whose people handled death more lovingly, attentively and Christly than any I had ever seen.

The building had a special cart of cold and warm drinks and food. They had beautiful low music playing in the background. When the loved one passed, the body was escorted out of the building with a chaplain, followed by a member of each department, in prayer and honor to the one who had passed.

I will never forget the respect and honor that was paid to those graduates of life. I can only hope that I provide some sense of positivity to those who are preparing for their journey here.

Ben Harper's Acoustic Version

"Waiting On An Angel"

Waiting on an angel

One to carry me home

Hope you come to see me soon

Cause I don' t want to go alone

I don' t want to go alone

Now angel won' t you come by me

Angel hear my plea

Take my hand lift me up

So that I can fly with thee

So that I can fly with thee

And I'm waiting on an angel

And I know it won' t be long

To find myself a resting place

In my angel's arms

In my angel's arms

So speak kind to a stranger

Cause you'll never know

It just might be an angel come

Knockin' at your door

Knockin' at your door

And I'm waiting on an angel

And I know it won't be long

To find myself a resting place

In my angel's arms

In my angel's arms

Waiting on an angel

One to carry me home

Hope you come and see me soon

Cause I don' t want to go alone

I don't want to go alone

Don' t want to go

I don't want to go alone

In Memory of Joan

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You guys who work in healthcare know when you're getting burned out. You feel itchy under the skin, the slightest irritants make you check the clock for when the hell you can get out of the building, and you realize you're not your usual patient self with the poor recipients of your treatment.


By last Friday afternoon, I was there. I canceled my evening plans, knowing I was a wrung out sponge with absolutely no energy to engage in fun. What a shame!


I was all the more understanding of my need to isolate when I got home and checked my text messages. I received a message that did me in.


My absolute favorite patient at my last assignment, Joan, with whom I spent a few minutes almost every evening at dinnertime, passed away Thu. I can use their real names because I have permission from her husband, Monty. And I want to show you who they are and were to me because they touched my life so beautifully.

My dear friends, Joan and Monty

Joan and Monty  have meant the world to me. Anyone who worked with us at the facility knew of the beautiful bond and the chemistry that occurred when the three of us were together. There would be songs, memories and laughter. Joan would often be cognitively clearer and able to converse appropriately.


Our connection was magic.


Monty would travel 45 minutes one-way every day to have dinner with Joan. He would show up about 3:30 or 4 with cookies from Whole Foods, and Joan would reach out with her arthritic hands to attempt to share every time I found them tasting their treats. She was so generous even in her cognitive decline.

Some days they would find me in the rehab department. Other days, I would traipse down the hall from one of the nurses' stations to find them exploring the far hallways in the building. The one thing that was consistent was that we would make sure to connect before I left for home.

There were many conversations of her travels to Europe as a singer with the Armed Forces Network during WWII, her experiences singing with traveling orchestras, her life as a young single mother and their touching "how-we-met" story.

One day before I left my assignment there, "Mont" began to sing to Joan. I had the great fortune to record just a snippet of it.

AUD0003 by travelingotr


It was a song created from the following poem:

Believe Me, If All Those Endearing Young Charms

by Thomas Moore

Believe me, if all those endearing young charms,
Which I gaze on so fondly today,
Were to change by tomorrow, and fleet in my arms,
Like fairy-gifts fading away,
Thou wouldst still be adored, as this moment thou art,
Let thy loveliness fade as it will,
And around the dear ruin each wish of my heart
Would entwine itself verdantly still.

It is not while beauty and youth are thine own,
And thy cheeks unprofaned by a tear
That the fervor and faith of a soul can be known,
To which time will but make thee more dear;
No, the heart that has truly loved never forgets,
But as truly loves on to the close,

As the sunflower turns on her god, when he sets,
The same look which she turned when he rose.

I never paid true attention to the words until now....how fitting that such a wonderful man would sing to his bride this song. 

Joan and Monty,

I love you both to the ends of the earth and back again...

Saying Goodbye

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Elizabeth had been at "the home" for 2 months, fluctuating between major decline and rallying to get back home with Lloyd. Those two were one of the handful of couples I have met during my career who gazed into each other's eyes after 60 years as if they had just fallen in love.

In fact, Lloyd told his cousin when he was 16, and Elizabeth 14, that he was going to marry that "pretty little thing" who was visiting her grandparents on the coast from her home in Sacramento.

He did, 3 years later. Lloyd is one of the most devoted husbands I have ever met. He visited our facility twice a day for the 2 months Elizabeth was rehabbing.

It became a struggle to make progress. She went into what we in the industry call "failure to thrive."  It means what it says.

Lloyd and I had moments during the last several weeks in which we knew Elizabeth would not return to her former state. My mission evolved from rehabbing her to home to dealing with more basic issues like making sure she did not choke when she ate and positioning her in bed to prevent decubitus ulcers.

We could no longer "skill" her for rehab. That means we had treated every area we could, and there was no longer anything else we could do.

Lloyd planned to take her home last Thursday, December 29. That morning, one of the aides informed me that she had already been assisted to his car. I knew I had to say goodbye.

I ran to the car and rapped on the passenger window. Lloyd was still inside signing her release. Elizabeth was so frail she could not reach to open the door, so I eased the door open and leaned in beside her.

We looked into each other's eyes. We smiled deeply. I told her what it meant to me that I had the privilege to know her. She told me she would never forget me. We hugged, knowing it would be the last time we would see each other. Lloyd's sister sat in the driver's seat and wept.

I left town after Thursday and returned late last night. I was treating a new patient in the gym this morning when one of the aides walked down to inform me that Lloyd was in the building. Elizabeth had passed away Friday morning, the day after she returned home.

Lloyd stopped by the rehab department, and we held each other tight for a moment. We recounted precious moments, like when he brought photos of their life together when they were young, how hard she worked in therapy, how devoted she was as a wife and mother, and how happy she was to return home. "She was so happy to look around all the rooms and see all the things she had collected over the years," he said.

" Lloyd.....you got her home. That was such a gift for her."

He agreed.

I knew it wasn't the time and place to cry, so we said goodbye, and I went back to my treatment and squeezed back tears.

Tonight, though, I figure it's just fine to feel emotional. Elizabeth had held on through so many days just to go home with her husband. She made it! It took everything she had. She barely held on each day so that she could leave this world from her own home. With her loving husband by her side.

Elizabeth and Lloyd touched my life in such a deep and simple way. We had a connection that many people never find in their work.

That is why I work with older people in a skilled nursing facility. It's not a glamorous place, but of all the environments in which I have worked, it is by far the most satisfying.

I get the privilege to share my days with people like Elizabeth and Lloyd.

God bless you, Elizabeth. Rest in peace!



Photo credit: http://wallpaperson.net/photo/nature/rays_from_heaven/22-0-7087

Lesson of the Day: Live - and Die - Gracefully

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Mabel has lived in our building for years. She is 91; about a year ago, when I came here, she began to lose steam. She went from walking to using a wheelchair. Then she began to have falls when she wasn't aware of the loss of her strength, and she still thought she could take herself to the bathroom.

Mabel had a stroke last month. She came "home" a different woman.

She has tried her best, we see that, but she has lost her will. In the past week, she has quit eating, taking her meds, and getting out of bed.

I have worked with her to see if we can get her to eat. I offer her half teaspoons of pureed food, and small sips of thickened liquid.

(When people have a stroke sometimes, they lose the ability to swallow normal foods. When this happens, the food must either be chopped up or ground into small, soft bites or pureed in a food processor, depending on how much of a problem it is to swallow. Same with liquids - if you start coughing on regular fluids, you go to what is called nectar thick, then progress to honey thick water, milk, juice, whatever you're having....in Mabel's case, she can either take it from the spoon or if the cup is held to her lips. )

My dear Anita, fellow therapist, tells me that Mabel is unable to get up in her wheelchair today. Her face is cloudy and eyes misty. "I hope hospice comes in soon," she says.

Me, too...

We have been tag teaming to see if we can get her out of bed and up in the wheelchair to prevent her from getting pneumonia. "I'll work with her in her room," I assure Anita. I pick up her lunch tray and walk quietly into the room.

Mabel is laying on her back in the bed, head and feet raised slightly, and eyes closed. I speak in a low voice to her - try to be soothing, anyway - and I stir her thickened water.

"Can you take a few bites, Mabel?"

Eyes stay closed. Her head sways slowly back and forth in a certain "no."

She refuses food. She takes a few sips of water.

That is it.  That has been it for over a week.

I put the glass on her tray. Suddenly, her hand shoots out and grabs my arm, runs down my forearm and squeezes my hand so tight.

Ever heard the term "death grip?"

"Mabel, are you afraid?"

And her sweet, old, wrinkled face nods yes.

I sit with her then, knowing how difficult it must be to lay in that bed alone, knowing that she is dying, and having not one person there who has known her in her former BNH (before-nursing-home) life to comfort her, tell her stories about their shared memories or give her TLC.

Wow.

I stay there as long as I can, but it's time to move on to work with other people. I ponder as I walked down the hall back to the rehab department...

I hate to bring this up, but we are all going to be there one day.

I've come to believe that it's not just about living gracefully. It's about dying gracefully, too.

In a Basics of Buddhism class last year, Lama Chuck told our diverse group that Buddhists believe that the state of a person's mind in their final moments is of utmost importance.

It takes a depth of awareness to move through this period by understanding
what your purpose in this world has been, to accept assistance from others when you can't care for yourself, to forgive yourself and others, and come to full acceptance that you are getting ready to close your own circle.

It is our opportunity to practice compassion with each person and each death. Joseph Goldstein writes about compassion that, "It is not the suffering itself that causes our discomfort; rather, it is our aversion to it and our sense of separation from other."

Rather than thrashing in fear and holding onto a lifetime of resentments that have separated us from the ones we truly love, we are challenged, as we close out our time here, to move gracefully and with trust into the transition, the outcome of which none of us can confirm.