It’s the Only Thing I have Left for You – Guest Blog

When the Best Medicine Isn’t Traditional Medicine – This is the story form a true healer and I’m grateful he allowed me to post this on my site.

It’s the only thing I have left for you

I was a brand new physician on call and he had fallen off a barstool about a week earlier. Eventually he had trouble breathing and the ambulance took him to the Emergency Room. A chest x-ray, then a CT scan showed he had bled into the pleural space around his right lung and collapsed his lung almost completely. He had two broken ribs and was short of breath and I could see every breath was painful for him. He winced when I examined the bruised area below his right armpit and he stopped his breath short when I put my stethoscope in the area of his broken ribs.

He didn’t complain and, in fact, he never complained. He had to be taken to surgery for a decortication of his right lung, which meant the surgeon had to make a large incision between his ribs to go in and scoop out and peel off the clotted blood that was stuck to his lung. He had lost almost half his blood volume and needed transfusions before he went in to surgery. After surgery he had to have a tube going into his chest to pull the air and blood out continuously so his lung could gradually inflate itself again. He was on a ventilator for a few days and the tube was in for almost a week before the drainage decreased enough to pull it out.

He was polite every morning when I went in to round on him and he smiled at me every time, even when I could clearly see he was in pain. Once the breathing tube came out, he was able to talk, but he never volunteered any information and his answers were brief. He would never call the nurse to ask for pain medicines because he didn’t want to bother her and said he knew she was busy. He always thanked me for coming in.

He recovered from that completely and his collapsed lung just became a part of his history. We grew to really like each other and I was always happy to see him on my schedule. He had some abdominal pain at a visit several years later. I ordered x-rays and they showed pieces of shrapnel from a war injury in Korea. He had never volunteered that information and on further questioning, he also had shrapnel in his left knee. The shrapnel wasn’t the reason for his pain and it never really bothered him and he declined to have it removed. I made a notation in his chart that he was a war hero and needed to be treated with respect and for the most part the Emergency Room doctors honored that.

He continued to drink and off and on would end up in the hospital because of it. During his binges, he stopped taking his diabetes and high blood pressure medicines and eventually he was admitted to the hospital with a heart attack. This damaged the left side of his heart and made him prone to getting congestive heart failure, or fluid in his lungs. He didn’t come in for visits very often and most of the time I saw him was when he was hospitalized for something.

His diabetes continued to worsen and I could never convince him to take his insulin regularly. Consequently he suffered a stroke that made his right side weaker and that caused him to fall several times. He walked differently than he used to and he ended up with a blister on his right foot. That went on to become a sore that just never healed and he finally ended up with osteomyelitis, or an infection in one of the bones in his foot. This is very difficult to treat with antibiotics and he eventually had an amputation below his knee. He was never able to get the hang of a prosthetic leg and spent most of his time in a wheelchair.

His amputation made it impossible for him to live on his own and he was in a nursing home for about a year, then a group home. He always said the food was fine, the staff treated him well and he denied any pain. The staff brought him in for regular visits and his blood sugars and his high blood pressure finally came back into control.

I tried a few different ways to ask him about his war injuries and he always changed the subject. One time his eyes got moist when I asked him about Korea and his injuries.

“I couldn’t save him.”

“Who?”

“It doesn’t matter. It was a long time ago.” He changed the subject and he would never talk about it again.

His circulation was so bad that his left foot turned dark and he didn’t tell the staff members about it until his foot was cold. I saw him in the clinic and directly admitted him to the hospital. It was too late to save his foot and he had an amputation of his left leg just below the knee.

He came in a few times for urinary tract infections and he came in for regular visits, but years of uncontrolled diabetes had already done irreparable damage. His eyesight was failing and cataract surgery only helped a little. He was hoping laser treatments to his eyes would bring back some of his vision, but the treatments were to try to prevent further damage.

He went into renal failure and I had to stop one of his heart medicines as his kidney function was worsening. I referred him to a kidney specialist, but he didn’t understand anything that was said to him when I asked him about that visit.

“You’re my doctor. I’ll trust you to know what to do.”

He had episodes of congestive heart failure off and on and he usually recovered with a few days in the hospital on intravenous medicines to get his kidneys to get rid of the fluid buildup.

He was admitted for a similar episode and this time his x-rays showed a pneumonia filling his right lung. His temperature was high and his labs showed he was fighting an infection. He was agitated and moaning and needed to be sedated. He pulled his IV out and kept trying to get out of bed. His niece was his only relative and he had signed forms giving her permission to make decisions for him if he became incapacitated. He made it clear he did not want to be on a ventilator again.

Two days of IV antibiotics made no difference and his pneumonia was getting worse on repeated daily chest x-rays. His lung sounds were coarse and wet. I gave him a diuretic to try to pull some fluid off his lungs and it dropped his blood pressure too much to repeat it. He would intermittently answer questions, but mostly was restless and not responsive.

His niece finally asked if we could just make him comfortable, as he just wasn’t getting better and at 86 years old, didn’t have any reserve left. We stopped his antibiotics and I stopped all medicines except those for pain and agitation.

The next morning I went in and he was still restless and not responding to his nurse. His lungs sounded worse and his breathing was labored. I discussed plans with his nurse and she left the room and it was just he and I. I pulled a chair up and moved closer to his ear so I could talk to him quietly.

“It’s Dr. Vainio. I remember what you told me a long time ago. There’s no way you could have saved him. No one could and it’s not your fault. You did your best and he knows it and he always knew it.

I have something for you and for him. It’s the only Ojibwe song I know and it was given to me to sing in the American Cemetery in Luxembourg. I sang it there for my wife’s great uncle Johnny Mercer and everyone who died on that B-17 bomber and for every warrior there. It’s a Soldier Song and I want to sing it for you now.

It’s the only thing I have left for you.”

I didn’t have a drum, so I held his hand and I tapped out the drumbeat on the back of his hand with my other hand and I started to sing.

I was uncertain at first, but about halfway through the song, he began to relax and my singing became stronger. His grimace softened and he started to breathe easier and he stopped his constant restless moving. His hand had been simply resting in mine and he began to hold my hand and he held it until the song was done. He didn’t open his eyes and he didn’t say anything. After a minute or so his hand stopped squeezing mine. I held it for a little bit longer and I put it back on his chest.

His niece was with him and she called me after he died later that morning. “He was really calm, Dr. Vainio, and he died peacefully. What did you finally give him that made such a difference?”

“He was a soldier. I just gave him permission to die with honor.

It was the only thing I had left for him.”

posted with permission of Dr Vaino, originally posted In Indian Country
Arne Vainio, M.D. is an enrolled member of the Mille Lacs Band of Ojibwe and is a family practice physician on the Fond du Lac reservation in Cloquet, Minnesota. He can be contacted at a-vainio@hotmail.com.

I want to die in my sleep….but you shouldn’t.

“If I had my choice, I’d rather to die in my sleep”

Pretty common preference, right?

Here’s the good news:

Thanks to the wisdom of our body and how it shuts down to take care of you, that’s exactly what happens at the end of an illness or old age.

Over time, the individual has less and less energy, sleeps more and more, until he finally slips into a coma. While in that coma, the body continues to shut down and die. Depending on the illness one is succumbing to, that coma may last seconds or weeks.  So most people die in their sleep, as they wished!

Now here’s the perplexing news:

Although this is something we hope for ourselves, we often don’t trust or honor this process when it is our loved one that is dying.

The reasons can be simple: not understanding the dying process, the pain of letting go, the fear that there is something we need to do, or not do, to keep our loved one with us a bit longer.

When terminally ill individuals don’t want to get out of bed, or when they sleep more often, many concerned families declare they are over-medicated or perhaps giving up and willing themselves to die.  This can ignite a desire to stop a process they believe is hastening the dying.

There is also talk about ‘conscious dying’ and the belief that using any medications as death draws near will rob that person of final communications.

There is fear that medications are hastening death.

These fears must be acknowledged and addressed. It’s not an easy balance:  we want our loved ones comfortable, but worry about over-medicating. We want to honor the natural process of dying,  but we miss the conversation and hugs as they sleep more.  In my 40 years as a nurse, I have witnessed very few ‘Hollywood-type deaths’ where the person could say a few words just before dying. Usually they are in the coma, still able to hear you and feel the energy you bring to the bedside, but unable to respond beyond an occasional grasp of fingers, or a single tear of good bye.

Navigating the dying process and comfort needs requires the compassionate guidance and support of those trained in palliative and hospice care.

There are many individuals who will experience no uncomfortable symptoms at all and never take any medications in their finals days, yet the gradual increase in sleep occurs just the same. This is the natural process of the body shutting down. The presence of any symptoms depends on the illness and medications are there if needed to keep the person comfortable, not ‘knock them out’ or hasten death.   No one wants to think they or anyone they love will experience discomfort before death because needed medications are being withheld simply due to lack of understanding.  It’s that fear of physical suffering that can cause folks to say they would prefer a hastened or assisted death.

Know that increasing sleep is a natural part of dying.  Honor that process.  Provide necessary meds to promote comfort.  Surround them in your love as they slumber.  You are committed to the comfort of your loved one, just as you hope others will be committed to your own comfort when your time comes.

If you want to die in your sleep, let them die in theirs.

 

For more information about the dying process-  See “Dying to Know – Straight Talk About Death & Dying” on this website.

Pets and Grief: A Family Affair

4adb4dc5c7ef3e522c5bd8a9c1961431Getting ready to meet the woman I was admitting to the hospice program, I was cautioned that her animals were very bonded to her.  To gain access to her I must first gain the trust and then permission of her dog and cat, who were also in the twilight of their years.

The dog was lying by the entrance to her room, and I was quickly greeted by a wagging tail and contented grunt as I scratched his ears while murmuring what a wonderful dog he was to love and protect his mistress.  I then proceeded into the room.

The very large cat sat on the lid of the bedside commode, positioned next to the bed in which the frail woman lay.  I sat down in front of the cat and put out my hand, also acknowledging what a wonderful companion she has been.  She eyed me up and down and once satisfied I was no threat, reach out her paw to gently touch my hand.  It felt like I was being anointed.  I nodded to the cat and assessed her beloved owner.  At the end, I again nodded to the cat and this time thanked her for being such an attentive pet and I was allowed to give her a neck rub.  But only for a minute and then I was motioned away her her standing up and pointing towards the door.  The dog then walked me from the door to the waiting family.

In addition to talking about what to expect in the ensuing final days to weeks, we also talked about the animals and their need for closure and to grieve.  Since I was only the admitting nurse I did not see them again.   A month later,  while waiting in the hospital hallway for another family member who was in surgery, the daughter noticed me  quickly ran up and pulled me aside.

She excitedly told me how grateful she was we had talked about the need of the animals. Her mother had died peacefully a week prior and while the family gathered and cried together, the cat jumped on the bed.  She said, “I was about to push her off, but I remembered what you said.  Instead I watched.”  She described how the cat slowly walked over the the face of her deceased mistress and gazed into it for some moments.  She gently patted her faced twice and jumped down.  It was good bye. Recognizing the need of her beloved pets, the  the family then picked up the dog and placed him on the bed.  He also examined his mistress, licked her hand, and jumped off.  The dog and cat huddled together while the family did the same.

Per my recommendation, they kept an article of her clothing, her nightgown, on which the animals slept  for several days. It was on that nightgown that the cat died peacefully 3 days later.  I was told the aging dog was still curling  up on it.  The family reached out to each other, 2-footeds and 4- footeds alike,  both grateful and comforted in sharing their loss.

Grief is a family affair.

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Holding On, Giving Up or Letting Go : Finding Closure on the Road to Good Bye

We need you and can’t lose you now. You have to fight this so we can have more time. Don’t give up!

 

It may feel like person is choosing to die when they no longer want to fight. That can leave us with a sense of abandonment if we believe the person really has a choice. But in truth, there comes a time where we must all come to the natural end of life.   That knowing and acceptance often comes to the person long before the family.

Let’s face it. It will never be a good time for anyone we love to die. The desire to hold onto every minute, with the hope for more minutes and hours and days, is normal. The pain of loss is the price of love and we want to put off that pain as long as possible, but at what cost?

Ann was dying in the hospital. Her husband and two children knew she would never return home, and they remained by her side. After 3 days, I was surprised to see Ann was still clinging to life, but I understood when I overheard the whispered pleading of her young adult children.

They were grasping the hands of their barely conscious mother and kept repeating,

“You’re going to get better mom. We’ll get you out of here and when you are stronger, we’ll take that trip to Hawaii.”

 What Ann heard is that her children were not ready to let her go.  

So she stayed, just barely holding death at bay, despite her body working to shut down.

 I shared this interaction with the husband and he then took the children to another room to speak to them. They returned 10 minutes later, red-eyed but resolved.

They again sat by their mother and grasped her hands and this time tearfully whispered,

“We love you. We’re going to miss you.

But we’re going to be ok.”

Ann relaxed and died 10 minutes later.

Sometimes people need permission to leave. They may need to know that who they leave behind will be cared for, whether it’s a spouse with Alzheimer’s, their 20 cats, or even that their daughter who has yet to find a good man. Finding out and addressing their concerns is helpful in the letting go process.

There are times when the dying person knows how hard this is for the family, who is holding on, and may wait to die until they step out of the room or fall asleep at the bedside.

There are times when the family is ready and ‘releases’ their loved one by declaring:

“It’s ok to go now, Grandma”.  That’s ok.  Only need to say it once, though.  Now Grandma also needs to let go, as does her body.

You say feel it’s never ok to say that since it’s not ok that the person you love is dying.

That’s ok, too.  Good byes and closure can come in many forms.

Tell your favorite stories.  It affirms the life you shared while letting the person know how they will be remembered.

Holding on, letting go – a process to be recognized and gently honored for everyone involved.

Finding the Threads – Unraveling Grief

Part 2 of the Legacy of my Father, June 10 blog

My 18th birthday

Five months to the day after my father’s suicide.

The unwanted gift of tears arrived without warning,

without my permission

bursting through my wrapping of protective armor

that had been slowly eroded, not strengthened,

by the process of denial and minimization.

 

I had thought I held my grief well, the right way,

strong and silent

hiding behind my invincible shield,

proudly displaying our family insignia of “Really, I’m fine.”

 

But on my 18th birthday, pretense fell away

I fell headlong into the void when no father was there catch me and  say ,

“Happy Birthday, pumpkin head”

Why was I crying?

It had been five months – shouldn’t I be over it by now?

I judged my tears and perceived this weakness harshly.

Everyone else seemed to be fine.

But in truth I never asked

for fear my truth might be revealed. I wasn’t fine.

I didn’t know they were also hiding behind their own shields.

 

I did not understand for many more years

that the ever unfolding journey of grief takes a lifetime.

 

I initially avoided it by working hard to achieve – to over-achieve, actually,

To ward off my new sense of feeling unworthy.

A truly worthy child would not have a parent leave under such horrific circumstances.

Unexpected deaths can leave behind

the unwanted accompaniments of increased vulnerability

and fear of more abandonment by the survivors.

I did not know these feelings set up home in my unconscious mind, becoming drivers in my world.

 

It took another 10 years to realize I was angry.

I was angry my father killed himself

I was angry I had to try and understand and be sympathetic of his choice.

I was angry I was left to live with his decision, not his presence.

I was angry at myself for not being brave enough to tell him I loved him before it was too late.

Wait – how can someone be angry at a dead person,

a person whose acute suffering led to a desperate act? Have I no heart?

More self-judgment

until I began to recognize there are the many faces and phases of grief.

 

As a nurse on the cancer ward,  I became the inadvertent student of the patients and families I served.  Mortality rates were high in those days and I was grateful they  acted as my teachers and guides for the journey of death and dying, grief and loss.

I saw those that expressed their grief with loud wails and flailing arms.

Externalized grief was foreign to me, and initially I wanted to run,

but I learned to stay and be present despite my discomfort.

I witnessed the judgments when family members expressed their grief differently,

whether by demonstrating avoidance, stoicism, beating their chests, or crying.

It was easier to share grief with those who had the same style of grieving.

Other styles were deemed maladaptive.

 

I saw the guilt and fear that accompanied grief.

And I saw the anger.

“I begged you not to smoke and now you are dying of lung cancer, deserting us!”

“You don’t love us enough to try harder to stay alive for us.”

”If your faith was stronger, you could have beat this”

I recognized that beneath the anger was simply grief and loss.

Lost opportunity. Lost presence. Lost future.

A compassionate and understanding heart was the only treatment for that pain.

 

In understanding and accepting these feelings in others, I began to understand and accept my own.

By removing my protective shield to embrace my history and vulnerability

I could be more fully present,

without judgment,

a healing presence for others

to help them face the fears and impending loss,

share love openly, prepare for closure,

and thoughtfully create the legacy they will leave behind.

Death is hard enough.

Things left unsaid or undone is harder

for both sender and receiver.

 

My work with others became a healing path for me.

The unwanted experience that was initially thrust upon me when I was 17,

was unwrapped and unravelled over time to reveal the gift hidden deep inside.

By taking the threads from my initial unraveling from my father’s suicide,

I could weave a tapestry for my own life, personally and professionally,

transforming the painful lesson into an opportunity to serve those who are facing the end of life.

 

For that, I am grateful.

My Father’s Legacy – The Unraveling

My intention in sharing the personal story of my fathers suicide is to encourage reader to reflect on your own life, communication, ability to give and receive love, and raise awareness of the legacy your life will leave.

I was 17.
A high school senior, I was a girl with a plan.
In truth a plan born more of need than generosity of spirit, but one I hoped would pay out for us all.

But to appreciate this plan, you need to know about my family.
We were a strong, stoic clan
Grief was not talked about or expressed
Fierce independence was valued.
Asking for help or recognition was not acceptable.
Ours was a family that didn’t hug or utter endearments.
Acknowledgment of achievements was housed in a joke or backhanded compliment.
Mind you, I knew this jesting was how our family showed we cared,
but I wanted more.

My father was accomplished in many areas….author, store owner, expert on American Indian history and arts, political activist, humanitarian, editorial writer, illustrator, humorist and speaker. He set a high bar, but my goal was to reach it.
I wanted to be noticed.
I needed to be noticed.
I decided the way was thru accomplishment –
I was determined to be the straight A student
I drew cartoons and wrote stories.
I gave myself a voice by being a strong member of the speech team.
I tried to be the good shadow.
But what I really wanted
Was to be invited into the light.

So my plan was simple.
When I arrived in college in the fall, far away on the east coast,
I would write a letter to my father. I would tell him what a role model he was.
I would tell him I was thankful for his support.
I would share memories of him that made me smile.
And for the first time,
I would tell him I loved him.
On a piece of paper.
Safe.
I would be thousands of miles away, unable to see, hear or feel his reaction.
It was a risk, but one I needed to take.
I hoped he would tell me he loved me in return.
I held my daring undertaking in secret, close to my heart,
Protecting it like a tender seedling,
Feeding it daily with hope.

My plan was abruptly derailed January 3, 1972
My brother arrived unexpectedly at my school, accompanied by the girls counselor.
They looked somber and said nothing as they called me out of my classroom.
We walked to his truck in silence
Once seated in the front, he reached over and uncharacteristically touched my hand and quietly delivered the fatal blow to my plans in only 3 words:
“Dad committed suicide”

My mind raced. Thoughts turned desperate.
Just because a person committed a crime didn’t mean he would be convicted, so perhaps one can commit suicide and still be alive.
“Is he dead?” I finally asked, then fell silent again when I saw his faint affirming nod.
I fought to understand. My family valued rationale thinking, so there had to be an answer. But this didn’t make sense. I recalled the many hours my father spoke with troubled men on the phone, talking them down from drunken misery, dissuading them from their suicidal ideations and threats.
He told us suicide was selfish and even vengeful.
But my father was selfless, so how could his action make sense?

Once home, I walked numbly into my parent’s bedroom.
Only blood remained where his body had been.
Almost robotically I began to remove the sheets and clean up the blood that had spilled onto the mattress and floor.
A drop of blood fell only my white blouse and I paused to stare.
That was the last physical piece of my father I would ever have.
I was glad to have that stain to keep with me, to touch.

I looked up to see his shirt hanging neatly over the chair and something compelled me to check the pocket. It contained his carefully folded suicide note.
In short sentences he related that the vertigo attacks were getting progressively worse and that he was “sorry for the inconvenience” of his action.
He directed that money be given to the university for the study of that “damnably depressing and debilitating disease.”
No signature.
No final message to us
No “I love you.”
That was it? My stomach churned.
The paper felt cold in my hand.

I stared at the note for a long time, willing the strength to numb myself to the emotions that threatened to uproot the “Bahti family way of coping” .
I mustered strength to fulfill the expectation of being strong, silent.
Refusing to feel the need.
Refusing to feel the pain.
I was a “Bahti”, afterall
I had to carry on my father’s legacy.

 

And so began my journey,
to understand and transform this unraveling event,
and weave that into the legacy I choose for my own life.

Turning feelings into meaningful action

Think about the people who mean the most to you.  Why are they so special?  What role have they played in your life?

Have you told them that?

If not, what are you waiting for?

The bitterest tears shed over graves are for words left unsaid and deeds left undone.  -Harriet Beecher Stow

Today is the day!   By sharing your heart verbally or thru a hand-written letter, you will make their day.

 

Death and Dying

Whether to educate and support your own staff, your community, special group, or a combination, I try to make it as easy as possible.

Choosing from a variety of topics, designed to promote knowledge, comfort, and affirmation in a meaningful way, to become effective and compassionate guides for those facing the end of life. It’s a journey we are on together, all of us impacted, all of us learning together.

The new Pathways Blog

Welcome to Pathwayseol.com. I am Tani Bahti. Nurse, speaker, author, producer of “The Straight Talk Series on End of Life Issues” and award-winning DVD, “Living through Dying – The Struggle for Grace”, and I have been totally committed to improving end of life care since 1976. My experiences have provided me the good fortune to … Read more…