Lost and Found: Journey of the Spirit in Dementia.

Families facing the end-stage dementia of a loved one actually experience 2 deaths; first the existential death of the person they knew, due to changes in personality, do the things that defined their lives, or the eventual inability to recognize their loved ones. The second death is the physical one, often due to pneumonia or infection after years of gradual decline.

Working with the terminally ill for most of my 40 years as a nurse, I deemed end-stage dementia a difficult and prolonged illness that can mean years of stress for family caregivers. It never ceased to amaze me when I witnessed their commitment to care despite their exhaustion. What often sustained them was the memory of that person and the role he or she played when in full health.   The loss of that companionship and meaningful sharing can be devastating. These losses may be accompanied by changes in personality as filters are removed. A person who had been meticulous in their grooming or style now prefers to not bathe and does not care who sees them naked. This can be a shocking and unnerving transformation for the family as they do not recognize this new person. These are a few of the many losses and mini deaths before the final physical death.

Watching my own mother slowly progress in her dementia, another aspect, almost a rebirth, has been revealing itself.

My mother was the first to say, “If I ever get Alzheimer’s, just take me out and shoot me!” The fear of lack of control and losing oneself is shared by many , including me. But the downward slide into this insidious disease has also revealed a blessing, which came as a surprise to me.

No longer censuring her opinion, she freely reveals her thoughts, and my brothers and I are now collecting humorous mom-isms.

No longer worrying about her weight , she enjoys her desserts without apology.

No longer obsessed with her external image matching the preferences of her husband by wearing the right clothes or best jewelry, she now revels in her joy of putting on cheap plastic daisy earrings because, in her heart, she has always been a wildflower girl.

No longer fretting that I am unmarried, a status contrary to the beliefs of her day and the cause of great concern, her frequent frets of “Can’t you find a good man?” have been replaced with “How is that sweet dog of yours?”.  A four-legged male is now a sufficient source of love.

No longer worrying about the appearance of her home, she can sit for hours and enjoy watching animals scamper in the desert outside her window.

She has lost her tendency to judge and worry and replaced it by accepting and even embracing what is.

She is now complimentary of everyone and everything, appreciative of even the smallest gestures.

When the caregivers tell me how sweet she is and I quickly retort, ”This is not the mother I grew up with!”

Do I still need to hold onto that past?

This emerging way of being has resulted in my own barriers falling away, allowing for compassion, forgiveness, and love that I had not expected to feel.

We are both being transformed.

So now I reflect:

Nearing the end of her life, has she actually found the authentic life she had previously denied herself, unencumbered by external forces or the need to please?

I have lost the mother I knew, but gained a mother whose spirit is shining through with simple joy.

In letting go, losing her self,

has she finally found herself

or have I finally found her?

 

Letting go near the end of life is a unique and dynamic process.

What have you experienced?

 

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.

How will I die?

The question is not if we are going to die, but how we are going to die.  Too often our own fears or misconceptions keep us from having this discussion.  We then run the risk of making the decisions that are not congruent with our vision and wishes for a good death.  Therefore, timely, compassionate and honest education about the natural process of dying is critical to making difficult end-of-life decisions.

“How will I die?”                                                                                                                                                                                                         As patient or caregiver, do you know you can and should ask this question?                                                                                                As healthcare provider, do you have the language and comfort to respond to this question?                                                                  We all share responsibility in making sure we can navigate this difficult conversation.

It’s important to understand how an illness changes over time, and recognize the natural wisdom of the body at it approaches the final months and days.  That will help promote comfort and identify when it’s appropriate for aggressive treatment that may be focused on cure or stabilizing the disease, and when it is best to focus on aggressive comfort care only.  When we don’t know or ask is too often when a person ends up one of the 20-30% who die in an intensive care unit.  When we don’t know we may inadvertently push interventions or even food that creates more discomfort or even hastens death.  No one likes to be surprised or left with the devastating thought, “If I had only known…”.

Find out about the status of any disease, the benefit or burden of proposed treatments and the realistic goals of care, and weigh that against what the person describes as his quality of life.  Illness is a transformative process, so goals and perceptions can naturally change over time.  Communication over the course of illness is always the key.  Making any decisions based on fear or lack of information can carry a high cost physically, emotionally and financially, so it’s not just your right, it’s your responsibility to get the information you need on which to base your decisions that match your values, beliefs and personal goals.

Please refer to my free downloadable article “The Missing Piece in End of Life Decision-making” and the lists of questions to ask both your physician and your family to help you navigate this journey.  This site also contains other resources that may be of benefit.

www.pathwayseol.com

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…