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I couldn't let her go

by Jorgelina Zeoli 7 months ago in Humanity · updated 6 months ago
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Journey through Alzheimer's

Guilt of the Caregiver

May these pages bring insight and comfort to those whose heart is breaking as they go through this most difficult journey of separation and loss of the one they love the most.

~~~ 

1. Guilt.

Our Alzheimer’s journey began approximately in 1999, when my mom Nenetita’s symptoms began to intensify.

During those years as her only caregiver, I found myself in unpredictable situations,

situations I didn’t know how to handle,

situations I was not prepared to handle,

situations that required support,

and there was minimal or no support available.  

As I coasted from one crisis to another doing the best I could to take care of Nenetita, I found myself struggling with guilt.

I was tortured by guilt,

tied up in the twisted knots of guilt,

immobilized by guilt.

~

Taking care of Nenetita, alone with her at home, I was reaching the end of my rope.

Life was becoming unmanageable yet I was determined to keep her with me, for the very thought of taking Nenetita to a nursing home was tearing my insides apart.  

Looking back at my determination to keep Nenetita at home, I can see now that I was expecting of myself to do more than was humanly possible.

One person alone with very limited resources cannot take care of a loved one with Alzheimer’s.

It simply cannot be done.  

~

I believed that taking Nenetita to the nursing home was “wrong.”

The thought of doing what I believed was wrong twisted my insides

for it meant going against what I believed was right.

I had to let go of the belief that taking her to a nursing home was wrong.

I had to remove the thoughts: “I’m doing something wrong. I’m a bad daughter. I’m abandoning her.”

I had to replace those self-condemning thoughts with: “This is heartbreaking but necessary. I have no other option.”  

Making heartbreaking decisions, decisions that would potentially bring unwanted consequences, did not equal “doing something wrong.”

I needed to look at my own side with compassion,

I needed to acknowledge that I had been thrown into an excruciatingly difficult situation and I was doing the best I could.  

Expecting to take care of Nenetita at home was an unreasonable expectation,

I was setting myself up for failure,

beating myself up for not accomplishing the impossible.

I had to let go of my unreasonable expectations,

I had to let go of the belief that if I tried hard enough I’d be able to do it.

Once reason prevailed, the tight knots of guilt, slowly but surely, begun to loosen.  

~

Remembering how deeply I’ve loved my mother,

remembering that during the Alzheimer’s years I was driven by that love, regardless of the mistakes I may have made,

remembering that my love for her shaped my thinking and my actions,

it all helped alleviate and eventually dissolve my guilt.

Today my guilt is gone...

the healing power of Love...

the healing power of Self-Love...!

~

Getting to forgive myself, however, was not a simple process.  

“Your responsibility is to love your mother, not to be her nurse,” my therapist said to me as I struggled with these issues.

It helped, except I don’t believe that loving my mother was my responsibility.

Of course I loved my mother, but not from a sense of obligation.

I loved my mother but I also had many contradictory feelings about her.  

~

Conquering guilt through the Light of Understanding,

as well as the process of healing many other emotional wounds,

has involved taking a hard look at my inner truth,

owning all of my feelings,

including those which society says I should not have.

~

Looking at my inner truth,

not always a pretty picture,

particularly for someone who - like me - grew up being “a good girl.”

Looking at my insides has not been easy but it has paid off.

Releasing guilt has been part of the good harvest.  

~

2. She’s still there.

One day in 2007, I went to see Nenetita at the nursing home.

"Hi, Nenetita," I say. She answers with a stream of meaningless sound. "I am going to give you something to eat," I say. "Have you got something yummy?" she replies.

My mother had lost her ability to communicate and yet, off and on, she was capable of articulating a few sane words. Her sane words were no chit-chat. In this case the topic was food, probably one of the last things she was able to enjoy in this life.

~

One day at lunch time, sitting at a table Nenetita was feeling very sick. As it had happened so many times before, meaningless sound was pouring out of her mouth.

I remember standing next to her feeling so helpless ... so helpless …

What could I possibly do to help her?

All of a sudden she said: “Don’t worry about me.”

How could the sanity of those words ever be questioned?

Not only was she still there.

Her love for me,

her concern for me,

were also there.  

~

Through the nursing home years I held on to my mother’s glimpses of sanity.

I held on tight,

very tight.

I could see the disease advancing in the background yet I stayed focused on her sane core , ready to respond when she was able to come through.

Remaining alert and receptive to those brief moments of real communication sustained me.

In the final years powerful words were said,

words that brought about very much needed closure and healing,

to her,

to me.  

~

3. Advocate.

As I walked through the fire of the nursing home experience, a deep realization gelled:

I had to stand up for my Nenetita,

I had to become her advocate.

Learning to become an advocate was a long,

difficult,

excruciating process.

I wish someone had been there to guide me. I needed support.

Oh, how I needed support …

There was some, but it was not enough.

I made many mistakes and I paid a high price for them.

Caregivers go through hell,

caregivers need support within the system. 

Becoming an advocate meant, among other things , learning about Nenetita’s meds, being aware of their side effects, monitoring her symptoms, reporting to nursing home staff if I noticed something was wrong.

Also, I learned that being Nenetita’s health proxy I had the right and the power to say: STOP THAT MEDICATION.

A right that I exercised.

I’m not a nurse, I'm not a doctor, but I knew when things weren’t “right.”

I trusted myself,

I trusted my gut.

Becoming a strong advocate did not mean a lack of appreciation for the nursing home staff, their hard work, their dedication.

The staff kept me informed timely and consistently about any changes in my mother’s condition and medications, something I’m deeply grateful for.

In spite of the flaws of the system, I will never forget that the nursing home staff lifted off my shoulders a weight that I could no longer carry.

~

4. I couldn’t let her go.

A few times I witnessed my Nenetita’s dance with death as she flowed in and out of lethargic states that threatened to take her away.

I could not bear the thought of my mother dying.

Period.

If Nenetita died I would die with her.

I had to let her go

and I couldn’t let her go …

~

As I struggled through the nursing home years to find closure, to let go of Nenette, it became clear that there was still a lot of unfinished business in our mother-daughter relationship,

a relationship that had carried a Great Love,

and loyalty and beauty,

and conflict

and hurt

and confusion.

A relationship that had kept me trapped for most of my life in a symbiotic relationship,

a relationship that I needed to disentangle myself from

in order to let her go.

~

During those years I carried an urgency: I had to speed up the process of reconciliation with my mother before she passed away.  

I did my work and it paid off.

Through psychotherapy, creativity and spirituality , I dealt with the unfinished business that was keeping me tied up to Nenette.

The first three books of my memoirs, which address extensively my relationship with her, were written and self-published during the Alzheimer’s years.

Still, there were two more pieces that required resolution before I could let her go.  

~

Massachusetts 2007, at the nursing home.

The two most wonderful words my mother ever said to me.

Lost in her dementia, a stream of meaningless sound pouring out of her mouth, two words stand out from the rest:

“Perdonáme, Jorgita.”

(“Forgive me, Jorgita”)

~

Throughout her life, Nenette had never been able to say “I’m sorry,”

she had never been able to acknowledge her mistakes.

It was only in her late eighties, from the far away world of her dementia, that for the very first time ever my mother asked for my forgiveness.

It was only then that I learned that she knew she had hurt me.  

Her words also reaffirmed my conviction:

she was still there,

and she too was looking for closure.  

~

The power of two words ...

“forgive me”...

the weight that was lifted from my heart,

a weight I had carried for a lifetime,

the relief

the release that I felt

no words can describe  

~

My mother had asked for forgiveness and I was not ready to grant it.

In spite of all the inner work I had done, I was still choked up from our lifelong toxic, abusive, dysfunctional relationship.

That was our truth ,

great love and great dysfunction.

~

It was now crystal clear,

to let go of Nenetita I had to forgive her ,

nothing else would do

~

In 2009 I came down with pneumonia and for many months I was unable to visit Nenetita at the nursing home.

When I became stronger, wearing a mask for I was a high-risk, I went to say good-bye.

I had written a letter to her,

a very carefully written letter.

I had to speak my truth to my mother,

something I had never been able to do

for she had never been able to listen.

Now, at the end of her life and from the space of her soul beyond the disease, I knew she would.

My mother was finally going to listen to what I had to say.  

~

I had to speak my truth with compassion and self-love

for I knew if I wrote to her words of blame or self-condemnation

those words would come back to haunt me. 

And sitting at her bedside I read to her:

“Nenette,” I said,

“I know that you can hear me and understand me.

I have something to say to you:

I have loved you as I have never loved anyone

and you chose to sacrifice me,

I have carried your weight through a lifetime,

I cannot carry you any longer,

I took care of you the best I could,

I cannot take care of you anymore,

I have nothing left to give you,

the sacrifice is over.

I am walking out of the prison you built for me,

I need to take care of myself now.

I have nothing left to give you

other than my forgiveness.

You have my forgiveness,

and I know Christi forgives you too.

You have been forgiven,

you have a clean slate now.

Wherever you are, wherever you are going,

you are being held in love.

I have come to say goodbye,

I wish you peace.

You need to move on

and so do I.

You need to move on without me

and I need to move on without you.

Reach out to the Light,

reach out to your own soul,

reach out to Eternity.

a Loving Embrace is waiting for you.“

~~~

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www.jorgelinazeoli.com

Vocal.Media Challenges: Fiction Awards

Other stories by Jorgelina Zeoli

Jack and The Guys

And the table went PSST!

Numb little robot

 The Heartbreak, Journey through Alzheimer's 

 Speak Truth

The Ordeal, Clergy sexual abuse

Predator, Part One, a memoir about clergy sexual abuse

Predator, Part Two, a memoir about clergy sexual abuse

Humanity

About the author

Jorgelina Zeoli

Jorgelina Zeoli is a former recital organist and teaches singing and Tai Chi. Her memoirs, films and songs focus on personal growth and the healing of her inner child. She incorporates humor, poetry and art. She resides in the USA.

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