WHO WILL PROVIDE THE CARE?

I finally read something, in the NY Times, about The Zen Hospice Guest Home* in San Francisco, which closed down last summer.  Though The Zen Home was known to many workers in end-of-life care, others may not consider this significant news. It seemed incredibly sad to those of us who understand the immeasurable value of a home-like setting in the non-profit sector for dying persons unable to remain in their homes, with excellent care provided by staff experienced in end-of-life care.  The Zen Home closure represented just another demise of a wonderful option for the dying.  Financial difficulties were cited in funding the day to day care for residents at the guest home.  This is becoming a common scenario in other communities across the country.  Options for non-institutional end-of-life caregiving in places other than home are often dependent on philanthropic donations.  Increasing funding dilemmas for smaller and more intimate hospice settings have become common, while these settings are also being affected by a more fettered and complicated Medicare hospice regulatory and reimbursement system.  

For many of us, if asked where we hope to die, “in my own home” is the answer.  But the reality is, many of us will not have this option.  Some research predicts nursing homes will indeed be the place of death for nearly half of us by 2030, even though not preferred by most of us. Deaths in assisted living facilities are often considered and reported as “community deaths”, (versus more “institutional” places of death), though some of us would argue that these facilities’ end-of-life care provision is not synonymous with hands-on care received in a person’s home by family members.

Sadly, many of the aggregate living settings, whether considered institutional or not,  are too often places plagued by staffing shortages, a revolving door of new and minimally trained workers, and profits paid to stockholders and owners, rather than shared with the minimum-wage-paid-workers who are actually doing the care-giving.

Regardless of the claims that progress is being made in hospice and palliative care accessibility and improving end-of-life care, I believe we will face an ever-increasing crisis in this country as our growing numbers of frail elderly impact both the place and the persons who will provide care for the dying.  We ship people out of hospital beds as they are dying, often to avoid penalization and receive adequate reimbursement from the Medicare system, and we have overwhelmed facility staff who simply cannot provide the hourly care needed when one lies dying. (At best, an average of 4 out of 24 hours represent the total patient care hours in most nursing home staffing ratios and will never meet all the care needs of the dying). 

What I will need, when my dying becomes a reality, is someone who will be the gentle hands and give the loving care in the middle of the night, when in a confused state I try to get out of bed; and someone who will clean my mouth, all dry and crusted from the “mouth breathing” common in the dying; and someone willing to turn me side to side and change my soaked sheets, from the recurring episodes of incontinence.  Who will provide regular drops of medication in my mouth, when I can no longer tell someone that my pain is worsening, and I have lost the ability to both talk and swallow?  A physical presence is needed, and it may not be my loving family member, but an underpaid caregiver in an institution that is severely understaffed and whose staff is overwhelmed.  How do we intend to find and train and retain the workers in the future who will actually do the physical care needed for the dying?

Dying well needs more than an educational focus for the upcoming generations of medical providers and academicians.  Trained caregivers must be available in order to provide excellent hands-on end-of-life care in these institutional settings where many of the dying will reside.  Currently, across the US, nearly all the day to day care in our institutions is provided by aides who are mostly high school graduates making slightly above minimum wage, many who worked as baristas last week and an aide the next. This has not changed in the last 40 years, since I began my own nursing career as a nurses’ aide. Chronic staffing shortages and high turnover rates plague the institutional settings that provide care to the aging population with advancing disease, many of whom will die in these institutions. We need a new plan and allotted funding, freed from the greed of increasing profit margins and corporate agendas, to improve these conditions in the future.  

We may be dying in places not of our choosing with care provided by too few hands at the time of our greatest need.   We will need more than education and research to change how we die.  We will need adequate staffing ratios in facilities, with accountability. We will need vastly improved monetary compensation, increased recognition, and genuine support for those who actually do the physical day to day care of the dying (those same minimally educated employees, also minimally compensated, who are doing the bulk of the care in facilities across the US).  We will need social change that demands a shift from profit-motivated health care to prioritizing the day-to-day delivery of excellent end-of-life care for all.  

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A FAREWELL IN 2018

As 2018 comes to a close, I am remembering a friend who died this year.  Over a period of many months, we had these wonderful talks that seemed a lot like Tuesdays with Morrie,* with moments of her insight shared during our conversations over coffee breaks and lunches.  Being a medical professional herself provided it’s own special challenge, along with the sense that this was happening way too soon.

Her peaceful exit followed a couple of years of really “living” and making the days count, in spite of cancer.  Below are some highlights of her learned wisdom.

On having a “Bucket List”:

“I don’t have a lot left to do, not that I didn’t want another twenty or thirty years, but I don’t have a ‘bucket list’, or a lot of things I need to get done. I’ve had a great life.” 

On having the hard conversations:

“I’ve had all those dinners and hard conversations with my family, even though they rolled their eyes and didn’t want to, they now are pretty ok with talking about this…”

“When I asked her (my doctor) to be real with me, and give me all the information without holding back, you know, ‘none of the bullshit, I want to know everything’— She did just that, she talked in-depth, in medical jargon (knowing I understood this) and about every possibility and treatment option, until my eyes glazed over.  I didn’t mean all that information! Talk about doctors not listening to the real message!”

On options, self-advocating and DWD:

“Speaking of options, She (the doctor) said I could retire— like that is an option! 

With regards to chemotherapy treatment: “She (my doctor) thought I might get two years, but what would that take, to buy two years?  I think I have a few months.”

(I ask, ‘What makes you think you only have a few months?’)

“Well, I don’t want to financially, emotionally and physically bankrupt my family.  It’s why I’m glad I live in a state like Oregon, where I have some say about that. I’m glad to have options.” 

We talk a little more about DWD in the state of Oregon, though she is not totally certain this is what she will do.  (She is just happy to have a choice, she tells me.  And ultimately she decides not to go that route.)

On continuing treatment:

“I was kind of convinced (by my doctor) that this new treatment might give me a couple of years, instead of only a couple of months.  So I did a handful of treatments, and I was so sick, and the tumors grew, and I said I didn’t want to do anymore chemo even though she was a little upset with me.  I know this is something everyone does differently.  For me, I get as much benefit from the other approaches I’ve taken.”  

(In addition to living many months past the predicted time, even without continuing treatment, she has used things like massage, meditation, acupuncture and imagery and successfully reduced the need for significant amounts of pain medication in the midst of a very aggressive cancer with metastasis.)

“I’ve taught them (the hospice team) some things about palliative care, and I am directing my own care, even though I know I’m not in control…” and she punctuates this statement with a deep, gusty laugh.

On grief and guilt:

“I’ll tell you a story.  When my daughter died, I carried grief around with me for 20 years.  It was a burden that I could not put down, only a monster would lay down that grief!  I knew it was my burden to carry.  I didn’t want to be a monster… 

Then, when I was on vacation in the islands, I went to a healer for a facial and massage, and she told me I could have a ‘reading’ for free.  I don’t know if you’re into that kind of stuff, and I am not sure if its real or not, I just know what happened.  She told me in the middle of things that I didn’t have to keep burdening myself with my grief, that it was ok to lay it down.  I realized how much a part of my body that grief had become, how guilty I would feel without it, and what a monster I would be to let it go.  And then it dawned on me how ridiculous that was, that I didn’t have to continue to carry it with me, that in fact my daughter if she were here would be so upset with me that I had carried it for the past 20 years.  I learned from that very day to begin living without that heavy guilt of grief, and I have continued to experience this sense of freedom every day since.”

On writing her legacy:

“I know that we don’t always share the dark things, the parts of us that we aren’t proud of, our mistakes, the things that in fact form us to be who we are as humans.  I need to tell the story of my dark places, my mistakes that are a big part of me.”

On lessons learned:

“It’s hard to say what has been the greatest lesson.  I realized I was not in control of anything.  I am not in charge.  And I learned to let go…I will have to let go of everything.  But even though I say I’ve learned the lesson, you know how that goes…everyday this is a lesson I must repeat! (She chuckles, and smiles knowingly.)

On living:

“So much to do, so many projects to get done, and I worry I won’t get it all done.  But then I realize I will get done what I am supposed to.”

My last visit, as we sat quietly on a not-so-good day, she told me she had finally finished her projects, completed the family gifts of mementos to remind them all of her… later on.  She looked a little forlorn as she whispered “I don’t know why I’m still here.  I was supposed to die a long time ago”.  But some of us know how blessed we were to have her stay, even a little while longer.

(*Tuesdays With Morrie, by Mitch Albom)

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HOSPICE ROLES

father-1837457_640I will be happy if I never hear or read of another palliative or hospice-trained person saying something like, “she should just be the wife (or whatever the role is) and let us be the caregivers”.  “Should’s” are often not a helpful stance in anyone’s end-of-life journey.

Like others, my first glimpse of hospice care was the team who came to help my mom care for my dad the last 3 months of his life.  At the time, I was a newer nurse working in critical care, and lived a couple hours away from my folks.  I had watched the dying process many times as we valiantly attempted to stave off death from our critically ill patients. But seeing patients dying in the hospital was a very different experience.

Dad’s diagnosis of two separate cancers, both colon and lung, had initially been treated with a brief run of chemotherapy, then the lung cancer was complicated by brain metastasis, followed by a few radiation treatments that took the stuffing right out of him.  I remember when dad said he was done.  He wanted to stay out of the hospital, and mom called in hospice.

I came down every week to help care for dad.  The hospice crew would come and go, giving mom a much needed break and also help everyone understand what was happening.  Though I knew death as the enemy in the hospital world, I had also had opportunities to watch many families provide a loving presence even if they were not the ones providing the physical care.  Sometimes, only that presence was the antidote for an anxious and confused patient.  I learned to value this—perhaps more than all the technology we could offer in the hospital.  Eventually, I sought hospice nursing as a means of providing a different way to approaching caring for the dying.

A decade after dad’s death, as a hospice nurse, I was traveling that 1-5 corridor again, this time to help care for my mother.  As both a nurse and a daughter, I learned another way to see the family, the care, and the hospice team.  I recognized the value of each person’s experience and also how the different roles we all juggled could add depth to the shared experience.  I could understand a daughter caring for her mom at home, because I had experienced that.  I could know the trepidation of a nurse who was also the daughter caring for her father while he lay dying, because I had experienced that, too.  I knew what it was to feel helpless, both as a daughter and as a nurse.  I understood, from my experience, how hard it is to separate these different roles that make up who we are.  Nor is it necessary.  I believe I can be a daughter, a nurse, an advocate, and a caregiver, without the need to separate these roles into tidily bound boxes.

Families do end of life care in all kinds of ways, from all sorts of perspectives.  Though I have participated in many hundreds of other’s journeys, I know I am not an expert in how things should go.  I’m not sure “should” is part of the vocabulary.  There really is no right way.  It is simply a journey that all of us will make.  Most of us hope when it is our own that it is upheld with kindness, imbued with dignity and encircled with love.

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ONE WILD AND PRECIOUS LIFE

diamond-158431_640What will you do with your one wild and precious life?  Mary Oliver.

I was thinking about legacy, and how the world shapes us.  There have been so many lives shared with me over the years: some people I have known only briefly, others for longer times.  I am always cognizant of the diverse and sometimes terrible ways their legacies were made.  So often, what was truly harsh in this life became refined before their lives were done (like the heat and pressure that creates the beauty in diamonds).

I have some vivid mental vignettes of their shared experiences that shaped their lives: The purplish stamped numbers on an old woman’s forearm, and the losses she suffered in this life that moulded her into a person who quietly survived— teaching her children to never let life beat them down;  The serene age-lined face of a man whose students hung on the cherished words he spoke, himself saved from an abusive and brutal life through his dedication to inspiring literature— still quoting and teaching wisdom as he left life behind;  The gentlest man who had overcome his own demons and continued to bring support and light to others in the clutches of addiction— remaining a mentor until his last breath; The pale faced little girl whose inherent limitations in this physical life created total dependency—and whose happy demeanour brought laughter and joy to her family throughout her short lifespan; The man whose livelihood and family had been torn apart during a government-led internment— who spent the remainder of his days lovingly growing plants and enhancing lives around him with beauty.

For many, these stories will go unnoticed in the world, their accomplishments will not be heralded after they are gone and their obituaries forgotten… though a few will remember.  When all things are taken into account, it may seem insignificant.  It may seem as though they just happened to have been in a certain place, and the experience just befell them.  It may seem as though none of it really mattered in the end, since all of us will only be remembered for a time.  Yet they made a difference in their small corner of the globe.  The events in their life shaped them, and they in fact did something wonderful with their wild and precious life.

I’m taking a moment today to remember and thank each of them; it was the sharing of their lives, their legacies, that made their precious life even more precious to me.

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WHY HOSPICE, WHY NOW?

vintage-1354642_640-2There is a question suggested for hospice staff to consider when they talk with people about hospice services.  “Why hospice, why now?”  Ask yourself, what makes this moment in time the reason someone might decide on hospice; what about this time is the right time; how might this person’s goals for their life, and death, be served best now?

It’s a question we thought about, we two nurses, as we gingerly stepped through an obstacle course of a yard, ignoring the no trespassing signs, and entered a particular place, at a particular time, to speak with an emaciated “houseless” man about his goals for care.

I counted 12 people who came and went during our brief time there.  We sat in a 5 foot  x 5 foot space, our knees nearly touching, in the middle of a ramshackle, dilapidated hoarding home open to local folks who had no home.  We talked together, amidst large black garbage bags of trash and rusted tools and paint cans and stacks of plastic containers and obsolete papers.

His story was like most of the others’ who lived in this place, where the battle with drugs and alcohol had direct implications for the loss of family, job, and sense of belonging.  Except strangely he had found a kind of belonging. His friend was sitting next to him, who cared for him and hoped that the last part of his life could be lived the way he wanted.

As we sat, our potential patient talked of his picture, what death might look like at the end, and how he visualised his ability to “call the shots” continuing for a lot longer.  We listened, as he explained he wasn’t quite “ready for hospice”.

We two nurses observed his yellow coloring, his enlarged belly, his swollen legs, and his waning strength, and we knew it might indeed be time, much sooner than he realised.  But the question, “Why hospice?” doesn’t always have a quick and ready answer.  The why now? part requires someone’s acceptance of approaching the later part of a disease process; a realisation that this short life is nearly done; their desire to finalise plans for death without a lot of medical intervention; and the desire to have hospice help.

He let us know that he wasn’t in that space yet.  Maybe he would arrive there later. Maybe not.  We told him we could be available when and if he decided that hospice now was what he wanted.  As we headed out the door with our hospice agenda unfulfilled, his friend of many years assured us he would be there to make sure this man didn’t die alone.

Many of us who work in end of life care might share a particular and rather defined view of what constitutes a “good death”.  But the plan and how each person arrives there is never as straightforward or simple as answering that question, “Why hospice, why now?” 

It might not be hospice time just now.  Yet the question, and the time that is right for each person… “a time to every purpose… a time to be born and a time to die” (Ecc. 3: 1-2)….will end up answered, one way or another.

I always hope for each and every person I encounter, that it will be in their own way, in their own time.

.

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SIBLINGS

girlsv3J. can no longer easily get out of her recliner, and her adult sisters have arrived to help her manage these last days so she can remain in her home.  She tells us at our nursing visit:  “When they (the two sisters) told me they were coming up to be with me, I thought I had big plans and places to go, and we three needed to have things to do together. But I can’t seem to manage the beach trip, and it is so much effort to get out of the house now.”

She gently sighs.

J. continues, “We used to be so hurried when we got together, what with the kids and so much to do.  We never had enough time to visit.  Then it hit me last night, while we just sat around watching TV, it was quiet and peaceful and just comfortable, and I thought, ‘This is so great, to just sit and enjoy each other, this is quality of life!’  We haven’t had quiet time together like this since growing up together as siblings.”

Her mother is here as well.  The three women scurry about, fussing over her, trying to tempt her waning appetite with special dishes, propping pillows, helping her to the bathroom.  She suddenly decides that she really wants to eat a chicken leg, now that the nausea is a little better managed.  The two sisters leave mom and J. dozing in the matching living room recliners and run off to do errands.  Written on their to-do list: Finding a fried chicken leg.

J. is satisfied with these simple pleasures…content with these dwindling days together.

I’ve spent a few days with my little sister this week.  We get in thousands of words a day.  We hang together, in quiet moments reading.  We reminisce.  We laugh and cry.  We sing.  We shop.  We just enjoy looking out the windows.  We do nothing momentous.  We accomplish nothing remarkable.

I take a minute to remember J., and how right she was… I think to myself, how uncomplicated life becomes when all the busyness is whittled down to what really matters—the simple pleasure of just being together.

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BEHIND THE WORDS

Words can relay many things, but they only share a part of the message.  Even when words aren’t understood, or are unspoken, we can still communicate.  I recently made a visit to a patient who lay in his bed, able to whisper soft responses during our discussion of his health and care needs.  His spouse was sitting nearby, quietly waiting.  At this first meeting, the patient was able to tell me what was on his mind, but his wife had suffered a stroke and could only repeat the same word—just one word— over and over, for everything in her world.  The inflection might be different, the number of times she spoke the word might be more or less, but the word was the same.  It was the entirety of her spoken vocabulary.

This makes me think of Barbara, a patient of mine many years ago, whose frustration level with aphasia had created “behavior issues” for her with the staff at the facility where she was a resident.  As people hurried about her, it was rare that she had a say in what was done to her, or the timing of events in her daily life.  Something as simple as “I don’t want to wake up yet” was unable to be spoken, and she would lash out when staff were insistent that she get up for breakfast.  Over the time I knew her, she and I found ways to understand each other.  It was often guessing on my part, gesticulating and repeating on her part, but I learned to care deeply about communicating with her, to be sure her needs were met and let her know that she was valued.  She could have a say, even though she wasn’t able to speak it.  Some of us would listen.  Some of us  would try our best to understand.  Some of us would advocate for her.

I realized as I left this visit the other day, that Barbara had taught me that lesson all those years ago: Understanding doesn’t always need words.  It wasn’t hard to recognize that this wife, sitting at her husband’s bedside, was worried about him.  I had said a few simple words to her with some reassurance that he was doing well today, and her eyes lit up with pleasure.  She could nod her head to answer me, and we could look at each other, hold a hand, and share compassion and interest without words being spoken.  It is the human language of touch, of seeing and understanding that can be found when we take some time to really listen to each other.

Thank you again, Barbara, for showing me how it is done.

“The message behind the words is the voice of the heart”  Rumi

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A NEW YEAR

Perhaps because I heard a blessing, perhaps because I remembered a tune, perhaps because some I loved are gone, and perhaps because another year has gone by…I send this wish to you:

May You Always…

walk in sunshine

Slumber warm when night winds blow

May you always live with laughter 

For a smile becomes you so

May good fortune find your doorway

May the bluebird sing your song

May no trouble travel your way

May no worry stay too long

May your heartaches be forgotten

May no tears be spilled

May old acquaintance be remembered

And your cup of kindness filled

And may you always be a dreamer

May your wildest dream come true

May you find someone to love

As much as I love you

(by Larry Markes and Dick Charles)

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WHO’S SORRY NOW

i love youBullies might be sorry some day.
Who doesn’t have a story about being bullied? I remember being in grade school when there was a bigger girl who always lurked on the sidewalk with a couple of her friends. The three of them would call out and jeer at us smaller girls on our way to school. We used to say, “sticks and stones will break our bones, but names will never hurt us”. Now I know that name calling and blaming is hurtful, though.

My mother used to advise her young sometimes quarrelsome daughters, “be careful what you say, you can’t take words back”. There is great wisdom in that. As children we were taught that words should be chosen wisely; speaking truth and being kind. Words can wound, and bullies often use words to do so.

I have witnessed bullying as someone lay dying in a number of ways:

An elderly woman whose lifelong friend wrote words in a letter, questioning the righteousness of the dying woman’s life and creating both fear and confusion for her in her final days.
A son, whose Buddhist father lay dying, (now no longer able to refuse the priest coming to speak words over him), summoned the priest—perhaps to soothe his own need— giving little respect to his father’s wishes.
A final gesture of condemnation delivered, when an adult daughter sat at her dying father’s bedside, in his final days, and delivered words of blame and guilt for “not being there for her”.

Our words can speak encouragement and love. Our words can hurt and condemn.
A wise person* reminded us to say just a few things to the dying (perhaps for the living, too):
Please forgive me.
I forgive you.
Thank you.
I love you.
A lesson to learn: Choose our words carefully. We can’t take them back.
(*Ira Byock, The Four Things That Matter Most)

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THE ALIEN

the screamWe should never become immune to surprise. Too many things can stop us midstream and make us think about the novelty of our experiences. Every person who has been touched by the loss of someone they love has their own story of what it was like to be the carer of a dying loved one. These are unique stories (though often with common themes) and surprises should be expected.

The movie “Alien”, was a topic at last night’s dinner: That strange science fiction tale where the captain of the space ship is ultimately the lone surviver fighting an alien. The first hospice I ever worked for, and the movie “Alien”, came into existence in the same year, 1979. As I sat thinking about that coincidence, I naturally thought about one person’s story.

Jane was a wonderful daughter, who came from another state to move in with her dying mother. The home was in a serene waterfront setting, with waves that could be heard gently lapping along the shore and birdsong awakening sleepers early in the morning sunrise. But inside the home was another story. The final two weeks, Jane slept in the big bed next to her mother. Deborah suffered progressive terminal agitation as she was dying, at one point described by Jane: “Like she’s being possessed by an alien”. While Deborah was awake, both Jane and I could see the fear and confusion in her eyes that no medication could fully extinguish. When she slept there were brief interludes of what to us appeared to be fleeting expressions of peaceful repose.

As the days marched on, Jane relayed to me how exhausted they both were, and at one point during the night, having given medication which only seemed to allow brief relief, Jane stood in front of the bathroom mirror and enacted the final scene from “Alien”, silently screaming at the reflection “Die, Bitch, die”.

You, my reader, might be both surprised and appalled at such a story. Yet it provided Jane— the daughter who was so full of love and tenderness for her mother— a hilarious and comic-relief moment, both in those reflections during the night and as she told me about it the next day, saying she was certain I would understand even though it sounded “pretty monstrous”. She needed a little hysterical humour in the middle of those dark hours, as mom tenuously hung on day after day and night after night in the midst of dying… which had become so protracted.

There are times as a caregiver of the dying, as much as these dear ones are loved and will be terrifically missed, that a person feels so ready “to be done”. I have reminded many family members of this, while wanting the end to move quickly, and be over, then having an overpowering sense of relief when it finally occurs. Yes, relief. This is “normal” to feel at at the very end of someone’s life here. As much as I hate the word, “normal”, this sense of wanting to hasten the final act of dying might be described as “normal”— even though it may shock us all a little. Some of the hardest days of caring for a loved one are those last ones, that seem to stretch out forever, and most people feel helpless watching a person’s suffering go on and on. So don’t be too surprised, if you find yourself having a similar story to tell, accompanied by a profound sense of relief when the battle is over.

 

Posted in daughter, end of life care | 2 Comments