MIRROR MIRROR

mirror mirrorMy last visit with Ida and she grouches a little at Gerry while she tells me she definitely has good days and bad days. “Today is bad.”  This is rare: to hear a cross word exchanged.  Gerry has helped with all the daily chores; even though they have some hired help, Ida prefers to have his assistance with her personal care should she need it.  I review, yet again, the team members who can be available to Ida, like the bath aide, and she tells me, “I don’t like people seeing me naked.  I have small breasts,” (and she laughs with gusto).  I don’t mind if it’s Gerry …..After all these years I still think he is a lovely man.  Look at him.  He is a great man…”

As I look, I witness a shared expression that is filled with loving sweetness.

Ida comments “I have a lot more worries than just physical.  The thing I worry about more is my emotional state”.  She explains that she looks in the mirror and sees this person she doesn’t even recognize.  “I’ve been facing this all very nicely until I see herWho is that ugly woman? Who is that person, that nasty person that looks so awful?”

Gerry of course tells her she certainly doesn’t look awful, but Ida wistfully looks at their framed anniversary picture from not that many months ago, when she was shiny and healthy and proud that she still fit into her seventy-one-year-old wedding
dress and wasn’t feeling weak all the time, with an underlying achiness from the tumor growth that she seldom mentions.

Now she is thinner every day, while her belly grows larger.

Then she says “I have had plenty of time to think about all this.  To decide where the funeral should be, and imagine who will be there.  You know, I have my belief in God that has been a comfort to me all these years.  I have a spirituality that has deepened and I don’t feel at all afraid, like I know some people do.  But I worry about not being able to have this happen the way I see it.”

When I ask to know more about that, Ida tells me, “I want to be remembered in a kind way, not as some mean person, you know: a bitch!” and she shakes with laughter.

Gerry, who is hard of hearing, has to have this repeated as he scoots his chair closer and says, “This is simply not possible, for her to be a bitch”. 

As we all laugh together, I think to myself about the unadorned honesty of the dying.  And the moments of intimacy that I get to experience with people as special as Ida and Gerry.  I will miss them both.

The three of us do some problem solving together, taking care of a few of the practical aspects of improving her days whenever possible; while understanding some of her
frustration and irritability and easing her fears of becoming someone heinous: in fact she is a person experiencing dying.

I say a brief silent prayer, for a mercifully gentle passing for this beautiful woman with such concern for others, such intrepid humor, and such unfaltering love.

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COUNT YOUR BLESSINGS

bad luck“He’s not usually like this.  He usually is totally in control and has a lot to say.”  Jeff, hearing this comment, opens his eyes briefly to glare at his sister, but with good humor.  He tries to start and finish some thoughts but is dropping off to sleep, after a rough morning and some additional morphine doses to manage his significant pain.

So many things are “not fair” in life.  And for this man, as I learn a little of his story, life has been more than unfair this past year.  I am reminded again that people find ways to cope; find ways to laugh in the midst of misery; find love in their families, though they are so very imperfect.  Yes, making jokes about the marijuana that is helping with his pain and nausea, and being gentle with his wife who has early onset dementia in her late forties, and allowing his sister to begin taking over some of the things that he has always independently managed; these are things that Jeff is learning to do as his tumor is pinching off the blood supply to his heart and lungs, “changing” now becoming his new mantra more and more each day. 

My kids used to say when I became a nurse I stopped giving them much consolation for their injuries.  My saying, “No blood, no Band-Aid” has been repeated to me years later, they actually wanted to have Band-Aids applied for all the little “owies” even without evidence of bleeding!  (Who knew?)  So much in life is experienced in the unique way that we “see it”.  I am reminded today to “pay attention”!

Perspective changes when the small things become bigger, until they demand to be noticed.  We go our merry way throughout the day, often unaware of the gifts we enjoy each day.   I guess one thing is evident, when large glaring truths are screaming to be noticed, the mundane becomes overshadowed.  

I was aware today, like I often am, (thank you, Jeff), of the blessing of health, comfort, mental acuity, loving relationships and so much more.
Things I do not want to take for granted.  They are gifts. 

Today I am thankful. 

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GLORIOUS FREEDOM

old drunkAs another New Year approaches, I thought about a patient from last year on New Year’s Day, who had finally stopped drinking-many years too late-but still finding some resolution in his last few months of life.

Bondage in the dictionary is defined as the state of one who is bound as a slave or a serf.  There are many different paths to bondage. This past week, I witnessed two very different scenes, both however coming from a history of similarities, of past and current bondage. 

A man whose entire adult life has been ruled by alcohol now spends his final days alone, estranged from his remaining family members, in a 10 x 12 room.  The floor is covered with decaying food, scattered papers and loosely gathered trash, strewn articles of dirty clothing; an array of pill bottles decorates his counter.  He is still trying -with increasing
difficulty- to track the medication doses, to reduce the searing pain that 
continues to jolt him into the present.

He lies on his stained sheets, emaciated and looking as though he has lived these last months in a concentration camp; now too exhausted to get out of bed, his forehead gash sutured closed the evidence to his waning abilities.  He tells me he had no idea he was ready to fall off the cliff.  But here it is –the cliff–  and he is surprised. 

Yet he listens as I say I think he will not get better, and in fact this may be the beginning of his life coming to an end.  I ask him if there is anything I can do for him right now.  If this is the last week of his life, is there anyone he wants me to contact for him? 

He pauses, telling me “Let me think a minute…  Is Gina Lollobrigida still around?”

I laugh and let him know I am pretty sure it’s too late for Gina.  He looks me straight in the eye and slowly says, “No one I need to talk to. But thanks for asking.”

I hurt inside as I leave him, even knowing I have made arrangements for his move to a care environment that will provide comfort in his last days, and ensure he gets his physical needs met.  I cannot fix the broken parts of his life, the shards left from the thousands of bottles that he has emptied. 

Another man, his usual engaging smile on his face, tells me that he is a different man now.  “You wouldn’t have recognized me then, I was a pretty awful person”…. all the years of attending AA and working on the wounds of his life and he knows that when he goes, very soon, that his many friends will miss him.  It is the one sad feeling he gets, when thinking of no longer being on this earth, “I’m fine with dying, I know my time is about up, I just can’t quite picture not seeing these friends anymore”. 

He has lived alone, but not been alone, for many years now, as he has sponsored countless other men who have in turn been freed from the restraints of alcoholism.  His apartment is filled with the classical music station softly playing in the background, as he and I sip tea together, and he shares about being “really free soon”.

There are many things that could be described in this life as enslavement.  When I think of my two very different men, who will soon be completing their lives here, I contemplate the word freedom: the state of being free: absence of necessity, coercion or constraint in choice or action; liberation from slavery, or from the power of another; the state of being exempt or released usually from something onerous.

My New Year’s wish for them, and all those imprisoned, to be “Free, at last”.

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SPACESHIPS

molly

 Hal is one of the most positive people I have met.

 I mention this as he is signing up for hospice and knowing that life is slipping through his fingers.  He tells me that he did NOT learn this from his mother. 

 She is described to me as a person who was neurotic and narcissistic.  He never heard her say “I love you” but he did hear the statement, in more ways than he cares to remember, “I should never have had children.  I never wanted to be a mother.  I never wanted you”.  His critical and emotionally abusive mother created a vast sense of unworthiness for him through the majority of his childhood, well into adulthood.  I don’t doubt that some of the stories I do
not hear contributed to his years of drowning overwhelming misery in an alcoholic haze.  At some point in his middle years, he began to emerge from this sea of sadness, to become a different person. 

  It wasn’t easy, he tells me, but he has remained sober and a part of Alcoholics
Anonymous for over 30 years.  Along this path, he found a faith that changed his nature, and made him practice “positivity”.  He is engaging, lighthearted, and funny, and has these quips that I feel should be written down for posterity.  I can’t imagine the person he says he was once, “downtrodden and bitter, full of meanness”.

  At my visits, I don’t mention much about Hal’s disease: we know it is the elephant in the room, but there is no need to discuss it.  He totally accepts the fact that he is dying, and he tells me he visualizes himself as a space ship, “ready to fly out of here”.

  I love this mental image of Hal, strong and blazing.  I share a story with him, knowing I am meant to tell him about the little five-year-old I know:   I watched, while with great concentration, he took colored markers and made a picture for his mother who lay in the other room, wrapped in a beautiful shroud with a pocket over her heart to hold the family’s messages for her next journey.  The wise little fellow drew a brilliant and beautiful space ship, with a huge red heart, pointing to its center and telling me that his mommy was in this space ship and headed to heaven.

 Hal says, “Ah, yes, a child close to God before the world has dashed his perfect view”. 

And we smile at each other, in a moment of perfect and positive understanding.    

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A MAGIC PILL

magic pillAs the “national hospice month” comes to a close, I am cognizant of articles in newspapers, blogs, TV series and other notable media that have highlighted palliative care, hospice services, having the difficult conversations, etc., etc.  I am always pleased to see a little notoriety for hospice.  Speaking about the “H” word still worries folks, though.

Those of us who care for the dying, after answering the question, “What do you do?” have seen the same look on many faces: something of a frightened expression, eyes darting to the wall, with a comment like, “Oh.  I don’t know how you do it”, often accompanying a change of subject.  (This just happened to me tonight, as a matter of fact!)  We joke about being the “wet blanket” at parties, and certainly not the family member that people want to talk to while undergoing any potentially hazardous treatment or when seeking information regarding a new diagnosis.  My hairdresser refers to me as “the grim reaper” and laughs at his own joke.  

A patient’s family member recently gave me a sympathetic look when I noticed and remarked about the smile on his mother’s face after she had died; convinced I had an over-active imagination.  Needless to say, the most comfortable people talking about hospice are people who work in hospice. 

Those of us surrounded by death would tell you there is something magical and unexplainable that occurs as people are dying. The other side of that coin is: dying is pretty practical.  Patients sometimes look for a simple solution to the dying process.  “Isn’t there
something you can do?” I have been asked and I have wished it was so.  I have also known some of those patients who decided to obtain the medications that they take to end their life prematurely (the state of Washington has legalized assisted suicide).  My patient this week referred to his “magic pills” which he plans to take in the next couple days.  

No, Hospice does not provide magic pills, though I have often wished for something to make my patients live long healthy lives or some way to be done with life rather than experience suffering at the end.  I wish there were some magic pills, but there are no truly easy solutions. Today, I heard from a patient that “life should be simple”.

When my 7 year old granddaughter, still in the age of magical thinking,  began quizzing me about what I did as I nurse, I explained that I didn’t work in a hospital anymore, like her
mommy does; instead I drive in my car and go to see people in their homes.  I help their families take care of them because they are very sick, and most of my patients die.

Non-pulsed, she told me, “Oh.  Maybe your patients need more medicine, Nana”.

I wish it was that simple.

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“IF I SHOULD DIE BEFORE I WAKE”

child praying“If I should die before I wake….” A child’s prayer my little sister and I sometimes spoke together at bedtime, not totally aware of what we were saying, I think, or we would have kept our eyes open and not slept a wink!  How often have people used the image of slumber to depict dying?  I see it on the artist’s canvas; I hear it in the poet’s verse, and read the phrases…  Eternal slumber…  Sleep of death…  Slumber’s trance…

When the young grandchildren came to say goodbye to Gary, he looked like he was sleeping, except he could no longer be awakened, now just hours from dying. They touched his hand and kissed him goodbye, but none of them heard him answer the question that I had asked him earlier in the week,
“What are you most afraid of, Gary?”

He had been experiencing significant restlessness, especially at night: getting out of bed to move furniture around the house, telling his wife he needed to get packed for the trip… Keeping oh so busy; avoiding going to sleep, and dreading staying asleep.  He answered my question emphatically, “I’m afraid to go to sleep, and not wake up. I’m afraid of dying”. 

He spoke the words aloud, the fear we all share: this sleep, so akin to dying, chaperoning us into another realm, the land of dreams and wanderings.  I remember each of my children, at a very young age, being afraid of the dark, and waking with fears in the night.  No one taught them to be afraid.  They were born with the knowledge that approaching darkness and death awaits all humans.  Somehow, they knew to tremble.  In our rational adult minds, we say things like, “Don’t be frightened; there’s nothing to be afraid of.”

Really?

I have heard many people say, “I am not afraid to die” but I have witnessed the journey they made to arrive at that place, of fearlessness.  They worked hard to get there.  And, yes, many, many people die unafraid.  They have faced their terrors. They have “looked death in the eye”.  They have done the incredibly difficult task of recognizing their rapidly disappearing known existence. They have prepared for the unknown, the “next voyage”…life after death.  Gary finally achieved this.            

What have the dying taught us?  Embrace death while loving life; Love well- those in this life that will remember you, after you are gone. Believe in their love.  Rest in their love.

Love, the incarnate hand that is
stretching into eternity…

…“I pray the Lord, my soul to take.” 

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LEAVING

heaven on earthHave you perhaps heard or even said the comment following the death of an elderly person, “They had a good, long life”?  Of course, the reverse of that is the death of a young person, and we feel as though death robbed them of all the experiences and years which “should have been” before their life ended.

As people come to the realization that their life in this world is coming to a close, I’ve noticed no matter how young or old, each of them seems to reach an awareness that “life as we know it” is leaving.  They inexplicably move away from this life.  We have ways to describe and notice the phenomena, as the dying  person’s days become only hours and they know they must let go…in order to leave.

My mother’s words, as she lay dying, come back to me, “This is heaven on earth”…gazing from her hospital bed to the many family members gathered in her cramped living room.  How does one let go of “heaven on earth”?  Yet, not long after that, she began to move away from the concerns of this life.  The things that had carried such weight became less important.  Attempting to read her most treasured book, and struggling with it, she handed it to a loved one and said, “You read it now”.  I remember her not being able to strum the mandolin anymore, setting it aside and saying, “Oh well.” The letting go was incremental, until her hand no longer responded to my grasp.

Elsie turned 100 this year.  She told me she never dreamed she would live to reach 100, and now that she had, she wasn’t sure what to do next.  But when the dying part came, I heard her say “This isn’t easy, you know”.

Yes, I know.  From what I have observed many times, regardless of the years of wisdom, this dying is the hardest thing any of us will do.

Leaving what is known and loved to embrace the unknown, young
or old, how does anyone accomplish the task?

I was struck by these lines from the movie “Take Me Home”,

“We don’t die inhaling;   We exhale.  We leave it all behind.” 

…Deep breaths… And exhale.

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C IS FOR COURAGE

cThe only difference between me and my patient who is coming to the close of his life, is: I don’t “know” that I’m dying soon, but I, like the rest of humanity,
will experience death, too.  I hope to be courageous at the end of my life.  I hope to live now, this very moment, aware of this knowledge… to make it all count, conscious of how much life matters, and to live each day with courage.

Some days bring me tokens.

I have a picture of my sister with arms raised up to the sky, and the word “courage” etched in my mind.  My little sister is being the brave mother as her only daughter battles invasive breast cancer…diagnosed at the age of 32. 

So often I am reminded that life is fragile.  A moment in time brings a turnaround; a phone call with “news” causes us to veer off in another direction.  Cancer, the dreaded word, has visited my family recently and reminded us all, that our lives are forever changed in a split second.  

For my niece’s 33rd birthday, she received an implanted port for the chemotherapy treatments looming in the months ahead. She will undergo the hopefully life-saving and life-altering chemotherapy regimen designated effective for her type of cancer followed by disfiguring surgery. 

Life changes, in an instant. 

As we are blithely moving ahead, so busy managing all the details of our days, life nudges us and reminds us of simple things.
Hug your children, forgive the small offenses of others, spend time
doing what you value.  Be thankful.

Life has been amended this month.  October is breast cancer awareness month.  In my family, we are more than customarily aware. My C word for this month is not cancer….it is courage.  It is embodied in the beautiful spirit of my sister and niece.  

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CENTENNIAL WISDOM

wisdomA woman who is one hundred years old is oh, so slowly dying; we all sit at the bedside and feel as though we are holding our breath.  She is still breathing.  Her family and I are wondering how a person can stay alive day after day, taking in such a tiny portion of anything and only an occasional sip, while her body literally shrivels away. I am also astonished that she continues to recognize me at each visit.  She awakens from her dreamy state when I comment, “I didn’t think I would see you again; why do you think you are still here?”

She replies prosaically, “I’m learning what life is all about.”

I ask her, “Would you share some of that wisdom with the rest of us?”

“No, we all have to do that ourselves,” she retorts and slips away into another space.

I want her to wake back up, and tell me the rest of the story.  One hundred years of wisdom, and still learning.

What does that mean for the rest of us?

(Postscript:  a week later, I saw her face in death, with eyes wide open, in a suggestion of surprise, and a smile.)

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TAKEN BY SURPRISE

farewell“Dying is a lot like birthing, even though you expect it; you are still taken by surprise.”

I returned from a brief vacation, and as is the case with hospice nurses everywhere I suspect, I looked at my work emails very late in the night when I finally got home.  I saw Ben Nelson’s name and the time of death.  Even though my patient was getting weaker and had increasing respiratory symptoms prior to my leaving, he was not the person I expected to be gone when I got back. 

Although I can “leave work at work”, the relationships that develop over time when caring for a patient on hospice means that hospice nurses worry and fret a little, and sometimes a lot,  long after their shift is done. 

I had seen Ben and his wife the day before my vacation; even though I had concerns regarding a number of disheartening changes in his condition, I had sprightly said “See you next week”.  His wife, so diligent in her care giver role, reported him having more difficulty being active as cancer weakened his body, but they still enjoyed many good days and had plans for upcoming projects.  Sadly for them, their retirement years together never had an opportunity to begin before Ben’s cancer took a firm hold of his days.

I know how hard it is to be the caregiver, to watch a loved one slowly lose ground, to see the diminishing of the person you can’t imagine being absent in your life.  I have loved my own family members and watched their chest no longer rising, as their heart quietly stopped.

Even though I know what approaching death looks like, and try to prepare families for what appears to be imminent death, there are times when we all are stunned at how suddenly life changes.  Hospice nurses explain that we don’t have a crystal ball, and our best guess can be far from accurate. Life begins and ends outside of our determination. Not too long ago, my newest grandchild announced his entrance into the world; though we all expected his arrival, it came a month earlier than planned.  He surprised us, and for his parents life is forever altered.

Ben’s wife reviewed with me the events of those last 24 hours, having had no idea this would be his last day.  They had enjoyed a movie in the evening, after a family dinner which he didn’t eat, but was part of the gathering.  He had gone to bed as usual.  He’d awakened with some breathing difficulties early in the morning hours.  And two and a half hours later he was gone.

We think: We can be prepared.
We can know what to expect.                                                                                                    
We can anticipate.                                                                                                                 But, as his wife told me quietly, “Dying is a lot like birthing, even though you expect it; you are still taken by surprise.”

 

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