The Noisy Quiet and Chaotic Stillness

STORIES FOR THE TIMES:

COVID 19 has brought so many changes on us so quietly and so quickly
People around the world are infected,  either getting better or dying
The harbingers of this change are invisible to the eye and all senses
So we can only imagine what the black-hooded creature looks like.

Restaurants, museums, stores, schools, churches, libraries all close
Events, conferences, music venues, plays, celebrations all turn off lights
Directly or indirectly; salaries, benefits, basic necessities are lost by many
Those who have been suffering before are suffering even more now.

Outside and in, the quiet seems to feel so much more quiet than before
The stillness seems more still than usual and cities and streets are empty
The noise around us is so quiet that it deafens us in the hearing of its roar
And the stillness so great that it frightens each of us to look at its approach.

We have come to expect that things will always be and stay the same.
We expect that nothing will change or be rearranged in our lives
But in one day, all is different and unrecognizable and incomprehensible
And change is upon us, want it, like it, or not - we never expected this.

Buddhists studies say that we should accept all around us is impermanent
Knowing that every day everything around, in front and behind us changes
Even if imperceptible to the eye or ear or nose or taste or sense of feeling
Even if changes go unwanted or unnoticed, celebrated or lamented.

From the time you woke up early very early this morning on a Monday
Everything about your physical being is no longer the same later on a Tuesday
Cells have died off, sluffed off, been rearranged or renewed by Wednesday
Organs do their job pumping, breathing, breaking down components on Thursday.

What might be the same, you think, is your attitude and your belief system
You might think the same thoughts you have always had about things and life around
Your actions and reactions follow the same triggers that you have used before
But suddenly they may no longer apply, be true, be appropriate, or be necessary.

So in this time of great change for all of us in the world, young and old
If we can change with the times it could become easier to feel the air
As we vow to change our antiquated thoughts and actions and triggers
We build a new you to reflect who you have or will become with new attitudes.

Have faith in yourself to know that it is OK where you are at and that you will grow
Have faith in your fellow humans that we will survive this and come out the other side
We will experience change and seek out the good in change and become stronger
And the world will most likely be a better place for all, because it certainly needs to be.

The quiet seems more beautiful to hear, the stillness seems more beautiful to experience
The noise seems so quiet that we can hear the birds make their music, sing their songs
The fear so great it energizes one to step up to change and recognize the gift that we have
And we will continue to tell our stories of hope, and love, and compassion, and life.

When Reality Isn't Real and the Imagined Is

I do my best thinking when I am in bed at night, lights out, heading towards sleep. For me, it is that floating level which quiets the noise, quiets the voices, and allows the inner messages to arrive.

I work at remembering my thoughts which come mainly in fully formed images packed with much information and easily forgotten, by adding text to the mind pictures to help me remember them so I can write about them the next day, as I am doing now.

• • •

Last night I finished reading Aliceheimer's: Alzheimer's Through the Looking Glass by Dana Walrath, a series of short readings about Alice, her mom, on Alice's journey with Alzheimer's. Some of the readings were sad, some uplifting, some insightful, some just were.

Obviously reading the book made me think about Gregory and the many adventures on our 12-year journey with Alzheimer's. The memories are stronger and the grief returns for a holiday visit and at other special times: Christmas, Valentine's Day, Birthdays, etc.

Some of the readings had to do with how Dana handled Alice's hallucination, being lost in time, not remembering losses, verbal repetition, losing parts of identity, etc.

Dana has very good insight into why these lapses occur, what they might mean, and how to handle them during interactions with her mom. I wish I had read her work while Gregory was still here, it would have helped.

I got to thinking that to the person living with Dementia, what they are experiencing is REAL. To us, often, what they are experiencing is the results of the progression of the disease, the breakdown of the brain, the loss of cognitive ability. We forget the person!

To us, they are living in the past, hallucinating, processing differently, etc. We know that what they are experiencing is not REAL but only perceived, we try to keep them safe, to assuage, to convince, to explain, to help them understand, to correct. We forget the person!

To us, their experiences are obviously a bit of "crazy," (sorry for the pejorative but sometimes that is how the behaviors present themselves especially towards the end stages of the disease.)

But back to the person with the diagnosis, WHAT THEY ARE EXPERIENCING IS REAL and no matter what we think, to them it is REAL! How difficult must that be for them? We often do not stop to think about the person diagnosed and what they are going through, we only think about our own attempt at maintaining the situation and "caring" for them.

What triggers a behavior might not be real anymore, but the behavior and the experience are real. When thought of in that way, it feels so painful to me that often there is little we can do except distract, hold a hand, assure, and possibly for a moment or two alleviate the confusion, frustration, fear, pain, etc.

But there is more that can be done. Be creative. One can attempt to understand the NEW trigger and if possible acknowledge it. If she sees dad (long dead,) treat that as though it is real. Ask, "How is he?"

If she sees monsters outside the window when it gets dark out, lower the shades before it gets dark and if you forget, pretend to "disappear" the monsters with a "magic stick" or "monster eradicator" poised as a pencil eraser and certainly "protect her" rather than trying to change her perception. "I am here to save you, Mom," will get you further than "Mom, there is no one out there!"

If she asks the same question over and over again, answer it over and over again. It is the least you can do. XXX wrote down the answer and handed it to her mom. Next time mom asked the same question, XXX referred to the written answer. Repetition of asking slowed down because mom was able to hold the answer in her hand. Be creative!

Be her mother is she thinks you are, let it be right after World War Two if she thinks it is, congratulate her on winning the beauty contest if she thinks she did. Telling a lie is OK sometimes!

Observe her behaviors and see if they might be pointing to other needs like thirst, hunger, needing to go to the bathroom which, for example, might be expressed by talking a lot about ocean voyages or how hot she feels, farms and animals, and stinky situations.

Above all, don't fight it, if it doesn't matter! Pretend that the REAL is real and chances are both you and the person you love will be better able to cope with whatever comes up.

If all you can do is to alleviate the confusion, frustration, fear, pain, etc. for a few moments, at least those few moments were free of confusion, frustration, fear, pain, etc.

So be it!

The Seven Faces of Grief

Grief is a very real thing. I only say this because experiencing it through Gregory's death, has allowed me the time to notice and think about it. It is real. It is a process. It unfolds and realizes itself in its own way, not really under the control of the person grieving. It never resolves although it does become easier.

It not only has emotional but also very real physical and bodily function effects. Not only does Grief make you feel sad but it also affects your energy, your appetite (in how you enjoy or digest your meals,)  your gut (in nervous stomach and toileting,) and whether or how well you sleep.

Grief seems to have a mind of its own in when and how it visits. A blooming flower, a song on the radio, an item in the grocery store can all be triggers to grief expressing itself. Sometimes Grief visits you at the level of a "suggestion or hint," sometimes in a wave that quickly disappears, sometimes in a torrent that seems like it will never end its flooding.

Lately I have learned to sit with Grief and accept the lessons it can teach me. It is painful to closely look at or accept Grief but pushing it away only makes it worse. So I allow myself times to grieve, but not for long periods of time!

At other times I thank Grief on its arrival but tell it that I do not want a visit right now. Usually, Grief will respect the timing and my request and will leave me alone for the time being. I remember to invite it back at a later date and welcome it then. Trying to forget or suppressing Grief only makes it worse when it finally does break through your defenses.

As I began sitting with and taking a closer look at Grief when it visited, I noticed that there seems to be at least seven types of Grief that one encounters: 1) Grief with the permanence of loss, 2) Grief in missing the past, 3) Grief on not being able to remember the past, 4) Grief over missed opportunities, 5) Grief and fear for self in the present, 6) Grief and fear for self in the future, and finally 7) Grief with the Mystery of Death itself.

1️⃣ PERMANENCE OF LOSS: Missing Gregory is big. We will never again hold each other, or kiss, or enjoy an experience together. I will only hear his laughter in my memory. I will only appreciate his creativity and talents in photos of things he accomplished and not as he executes them.

He is no longer an interactive, physical part of my life. I miss holding his hand. I miss our talks and our love making. I miss hearing him play his grand piano. I miss having someone to lean on when sad and with whom to make decisions. I cry over the "never agains!"

2️⃣ PAST MEMORIES: Memories of times past remind me that he is gone. Often instead of fond memories making me feel better, they make me sad. They bring on tears at best and sobbing and keening at worst. I am told this gets better over time, and it seems to be doing so, but still the overwhelming grief continues to visit at unexpected times.

3️⃣ MEMORIES LOST: Time goes so quickly. It has been 41+ years since I first met Gregory and while I still have memories of much of our time together, there are so many that no longer hold office in my mind.

This is the nature of growing older and in having had a long term love relationship but now that Gregory is dead, the grief seems to allow me to spend more time realizing all the memories that no longer are clear, if they even still exist, and without the hope of inquiring to amplify them or find out the truth.

4️⃣ MISSED OPPORTUNITIES: The mind begins to wonder about things I could or should have done more of, done better, or done in the first place. I am sad about the times I neglected to tell him how much I loved him and how important he was to me or the times we argued or when I was mean to him. I feel so bad that I wasn't as good to him as I could have been as we worked through many of the Dementia/ Alzheimer's bumps, pot holes, and turns in the road.

I realize that now that I know "how it all ends," it is easier to criticize my actions of the past but in reality when you are in the throws of day to day dealing with life, let alone Dementia/ Alzheimer's, your behaviors are the best ones you can muster at the time. I also need to take the time to remember all the things I did well, the ability to apologize immediately when I acted poorly, and Gregory's compassionate loving acceptance of me no matter what.

5️⃣ PRESENT: Grief also finds its way in as I try to rediscover how to spend my days without having Gregory here to share my life (like in the earlier days before Dementia/ Alzheimer's) or having Gregory to care for and to be the center of my life (while he continued to loose language, cognitive, physical and other abilities,) and finally when he moved into the memory care facility (now with a great support team but my still spending a lot of time involved.)

At times it still is difficult to fill my days after having shopped, put groceries away, cleaned the condo, made dinner, watched a few TV shows, read for a while ... only finding it is just 7:00 and I am ready to end my day. But who wants to or is able to go to sleep so early? Also, doing all these things by oneself when used to having a partner with which to do them is lonely.

6️⃣ FUTURE: Grief arrives when I realize I am 70 years old. Feel young but none-the-less am getting older. What will it be like to grow older alone? How brave will I be to travel the world by myself? What will my life be like as I slow down? Who will take care of me when I need help? What will become of me if I can no longer make good decisions for myself. I have trusted my "next in line" trustees for my protection, I love them dearly, in fact I trust them with my life (literally!) but still Fear of the Future is real.

A lot more fear could creep in, especially seeing what Gregory went through for so long, but I try to keep optimistic, and positive; and I am able to keep the worries at bay. I remember that with Gregory's illness, so many fears that I had never materialized so I needn't have worried. I also realized that spending energy on "working at not worrying" is as bad as the worrying itself. Big waste of time and energy for both!

7️⃣ MYSTERY OF DEATH: The last, but not necessarily the least important, is the grief of wondering what Death is all about. Of course Death is all around us but when it comes so close, courtesy of one you love so dearly, the mystery magnifies. In many ways I cannot really picture myself dead, and that is part of the Mystery.

I believe there is something after and that gives me a little consolation. But where is Gregory? What is his time like now? Can he see me or hear me? What makes up  a life when it seems to end to easily? Where do all those skills, abilities, and talents go when all is said and done? What is the bigger picture of Life and Death?

Gregory and I had opposing views of the process of death. I used to think that as I was dying and my soul/spirit was leaving my body I would look back and say, "Ah, now I understand!" Gregory's view was that he would look back and say, "Ah, more questions!"

• • •

As I am writing my views about Grief, I am celebrating the fifth month anniversary, almost to the day, of Gregory's passing. I am less bereft, cry less, feel less depressed. I am better able to spend my time, better able to be alone, better able to speak to and learn from my emotions and my Grief, better able to brave the future, better able to slowly let joy back into my life.

I have worked at reinventing a physical relationship with Gregory; not bodily, but through talking to him, imagining his replies, setting up a shrine with his photograph and items he cared for, revisiting photographs of past vacations and adventures, imagine I am enjoying things for both of us when I visit the the Botanic Garden or go to the Opera.

I have created ways to make my life meaningful, to be of service to others, to give back. I have made financial contributions, supported others in need, helps establish the More Than Ever Education Fund in Gregory's and my name, continue my blog writing with many followers, promote the documentary "Alzheimer's: A Love Story," and still hope to publish my memoirs with the hope that many of Gregory's and my lessons will help others know they are not alone on the path of Dementia/ Alzheimer's. 

The hole which was torn in my chest by Gregory's Dementia/ Alzheimer's and by his death is still there. It is the sacred place where we can still be together. When he died, I felt like his soul/spirit began to that hole so we could heal together. It has been working. The pain of Grief never goes away but it does get easier.