The Ghosts of Christmas Past, Present, and Future Revisited

Why this titled post at this time? I do not know. Is it because of Christmas Past, Present, and Future? Is it because holidays make me think more about Gregory and how much I miss his daily physical presence? Is it because of thinking of all those who have "gone before?" Why am I thinking of and processing the ghosts and silence that death brings?

I am energetic, so I am told. My energy flows freely from me and out towards others, people I know and those I just pass on the street. I smile and nod at the beggar on the corner as he asks for spare change to buy some dinner. I guess I smile a lot, for strangers often smile back as we walk past each other. I always have something I can say to fellow acquaintances in my condo building as we get on and off the elevator. I easily engage with strangers when sitting at a table of ten at some function or another, even if I do not know the other nine.

My energy also flows into the keypad of my computer as these posts seem just to flow out of me. Editing always later but the ideas and organization usually are in place from the beginning!

There is energy in abundance as I arrange and rearrange my collections, which can be found all over the condo. I am told that even though there is a lot to look at, my home seems peaceful and organized. When asked, I usually have a story or two to tell about each item: its significance, where it came from, did I buy it or did someone give it to me, how long I have had it, why do I like it?

Each room, in many ways, is a wonderland and a museum, much like Michael's Museum: A Curious Collection of Tiny Treasures which has been a permanent exhibit at Chicago Children's Museum on Navy Pier since 2011.

My desk in the living room has a collection which lives in front of the computer and which grows until the space is completely filled, gets emptied into a plastic shoe box, only to grow again and again. Kiddingly I attribute this to the Collection Elves working secretly at night.

On the left side of my desk, various collections come and go. Currently, there are some miniature Christmas Trees approximately 12" tall with antique German glass ornaments. There is a 1940's black ROYAL typewriter with a letter to Santa inserted in the roller.

In the living room plants adorn the desk, the kitchen island, and the intersection of the front hall and living room.

Paintings by Aydin, friend and owner of Prarie Joe's Diner in Evanston; and photographs (some antique and some by other friends) are hung on the living room walls and above the desk. A collection of fake grass fills the window over the desk.

In the living room, two leaning ladder shelves made of recycled wood hold more books.

The kitchen features a backsplash running the width of the room, made of alternating 8"x 10" and 8½" x 10" glass front picture frames with enlarged photographs I have taken of "kitchen things," like appliances, the stove, a pie, and a cup filled with coffee. The top of the cabinets is filled with vintage 30's and 40's greenware pottery. There are approximately 150 pieces!

My master bathroom has an immense collection of little things from China, Japan, Thailand, Taiwan, etc. All things Asian.

The guest bathroom features my Gnome collection: all sizes, colors, shapes, and engaged in all types of activities. My favorite "shoots you the moon" as you wash your hands. Here you can also find several art pieces by my friend Jake; beautiful oil paintings mounted on miniature canvases of interesting rocks and stones with the stone "model" glued to the back of the piece.

The guest room is lined with paintings, mostly of people, by Gregory and friends. Many of my souvenirs from Mexico are also in the guest room.

The entry hall has my "Leaving Shrine" with sounding bowls, Buddhas, prayer wheels, items representing the four elements (fire, earth, wind, water.) On the bottom shelf of the shrine is my bowl collection including bowls of ceramic, wood, rock, aluminum, pewter, silver, clay, basket, and one made of stitched together buttons.

Also down the length of the front hall are black and white photographs, all in matching black frames of the same size. Lined up on top of each frame are four smaller frames, in matching black frames, of miniature paintings we have purchased on our travels over the years. There are a few larger framed photography by friends.

Two shelves of miniature Buddhas, 25+, finish out the entry hall.

My bedroom includes most of my library including a full wall of books and a recently added reading nook.

Most recently, across the top of the bookcases, the width of the room you will see some 30+ "hands." They consist of glove molds, display fixtures, palm reading hand maps, and ones of metal, plastic, ceramic, and wood. They come in all sizes and colors as they reach towards the heavens.

Gregory's shrine lives in the bedroom also on a bookcase shelf on the side of the room that used to be his. Each night, his cat Gigi visits the shrine before she settles in for the night. There is an 8 x 10 photograph of him in a black frame. Grandma Carrie's, Gregory's much-loved Grandmother, sewing box contains his remains and some momentoes and photographs of his life. There is a sounding bowl all his own which I ring when I sit down to have a chat with him.



There is a collection of 25+ hearts of all sizes and types. There are a few bars of dark chocolate, which are his favorite. A Taiwanese wooden temple is on the self with a dozen miniature Buddhas surrounding the temple's porch. I have had a terrible time remembering to keep up with fresh flowers or miniature plants, so I have resorted to using some very tasteful artificial flowers in a beautiful vase. I say very tastefull because Gregory really hated fake :-)

• • •

So all of this brings me to the point of this post. Lately, I have been experiencing what it will be like when I am no longer here, alive, to put energy into those things I love, those things around me, those things I seem continuously to create. It is as if I am walking into the condo experiencing what it will be like for others when I am no longer on this physical plane and feel the silence, the stillness, the missing parts.

These feelings are not a foreboding or premonition of imminent death but rather, I believe, an overview look at my present place in life; past, present, and future; and my current state of being. It looks at the many "shrines" I create to life and to myself.

For the most part, my thoughts center around the fact that the story will be gone. For most people except those closest to me, the stories will be finished. There will be no more new collections, the existing ones will be dismantled, the coffee pot will no longer share the smell of freshly ground beans and the refrigerator will no longer keep the milk fresh.

The rooms will no longer entertain guests and will no longer cycle between clean and dirty, organized and disorganized, bright by day and lamped by night, nor reflect the seasons or holidays.

It is not that I am afraid of dying, it is not that I am so attached to the THINGS that I am sad or upset that I will no longer be able to PLAY with them. It is just that their essence, their souls, their energy will dissipate and eventually disappear, as I dissipate and disappear as well. 

Then my proverbial question of “What makes a Life?” will come into play. I will be remembered, I know. My name will be spoken, I know. Some of my stories will continue. Some of my things will sit on family and friend’s tables and shelves.

Most of the things will be enjoyed one way or another, whether by family or by strangers who purchased them in an antique shop, but they will no longer be alive or energetic as they are now and more sadly, for the most part, the STORIES will be gone. Except maybe this one and a few like it.

So what difference does a life make and the events and things which make up that life? Perhaps the memories left behind are what matter as well as being in the moment to enjoy the here and now which so fleetingly passes. When a waiter at a restaurant or a clerk at a shop asks me, "Do you have any questions?" I usually kiddingly reply, "What is the meaning of life?" 

For me, it is to LOVE and TO BE LOVED. That is enough. Let the things and the stories scatter, it was and is the LOVE that matters!

Past, Present, Future

Woa. Almost a month to the day since I last posted. I have been thinking about this idea for a while so I will give it a try.

When I think about Gregory and my 41 years together, I end up thinking mostly of the last 12 after the diagnosis of Dementia, most likely Alzheimer's Disease. I wonder why is it difficult to pull up memories of our earlier and middle times together? I can do so if I work at it but for some reason revisiting the Alzheimer's times, the good and the difficult, come more easily.

Right after Gregory died and I was in the throws of catastrophic grieving, my God-son Isaac had a wise insight: "The intensity of the 12 years with Alzheimer's trumps (as in the card game) the 41 years of longevity of your relationship." While the balance has changed and I am more able to recall the 29+ years before the diagnosis, I still wonder why the early memories are more difficult to pull.

An explanation I came up with is that during our early and middle years, we just lived and loved with the good, the bad and the ugly that a growing relationship entails. There was no urgency in our day to day life: problems came and went, celebration arrived and left, milestones and millstones occured, the chapters in our life rolled one into the next; and we just lived our lives.

In my older years, I remember looking back at my younger years thinking that when I was in my 20's, 30's and 40's, I took life for granted assuming that I never would really die. Young adults do not think about those things, the future does not carry import, and if it does, they do not really comprehend that all life ends, sometimes before you expect it.

Life insurance is not a high priority because one cannot fathom one's death. As you age death takes a greater place on stage. Friends die unexpectedly and a parent or two die and you loose one or several pets ... but still, when it comes to the "self," your ego does not allow the reality of one's own death.

With the diagnosis of Dementia, most likely Alzheimer's, for Gregory (and me) I think we began to accept our mortality. We began to live more in the "here and now," live more "for today," be more "in the present." When one lives in this way, each experience, each event, each day becomes more important. Holidays are celebrated with more enthusiasm and more attention to detail if only who knows if we will have the holiday again next year?

So in working through all this, I wish (to no avail) that I had paid more attention to the pre-diagnosis days, that I had loved even more, that I had cared more intensely. What I do have left are the memories, which as I said are more difficult to pull up, but pull them up I can!

If I concentrate on working out the details of Gregory and my past time together, but at the same time not trying to live in the past or "beat myself up" with the failures of the past ... I can now assign more importance to them and remember them in "full color" with the beauty they carry.

Sometimes it is easier to leave the past in the past, but there is also merit in remembering. So what I find is that I must work at carrying a balance of joy with the sorrow. At times I allow the tears to flow and at other times I turn off the spiket. I re-live past times but also emphasize the present. And might I add that the future is another story that I will think about sometime in the future.

What If Life Was Spherical?

Fellow blogger Susan presents "What If Life Were A Ball of Yarn" in which she discusses the possibility of a person with dementia being able to experience life as a sphere rather than linear. I like the concept, it can help the person caring for and/or loving the person dementia to be better able to "cope."

Finally, I tweaked it a little.

Click here to see Susan's post. (Opens in a new window.)

This is my reply to Susan:

First, your "disclaimers" are appreciated as that allows one to approach the "Ball of Yarn" theory with a more open mind. Second, I love the model!

While most of us look at time as a linear event, and therefore the passage of our lives as linear, there are also schools of thought that look past that to life in the past, present, and future all existing at the same time. I like that.

Let me tweak your model just a tiny bit, if I may, by saying that to perceive the way in which a person with Dementia/ Alzheimer's might perceive her life doesn't necessary mean their rearranging the bits of life's yarn and reassembling them but rather that they develop the ability (which most of us are not able to do) to perceive the entire ball of yarn at the same time thereby condensing past, present, and future into existing all at once and which could be called the "New Now!"

Since most of those of us without Dementia/ Alzheimer's are not able to do that, we perceive the person affected as "confused, disoriented, befuddled, random, and disorganized" as Susan says. Maybe the person with Dementia/ Alzheimer's is closer to the truth than we are!

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.