Posts Tagged ‘loss’

I’ve been musing on the notion of eternity.  What it means, and more specifically what it means to me.  Probably not the best idea to ponder on a dreary day still held in winter’s frigid grip, but I can’t seem to let go.  I understand that “eternity is now” and that this is very different from everlasting.  And I understand that when we let our minds wander out of “just this, here now,” into thoughts about the future or about the past, we lose connection with eternity.  The same thing happens when we get distracted by the tick-tick-tick of the passage of time because eternity is beyond time.

Eternity is what you experience when you get so lost in the moment, doing whatever it is that you’re doing that time disappears.  I’ve felt this on the racquetball court when I was so focussed on making a shot that everything else faded away and on the mountain when I felt awe from the view.  I’ve felt it in the garden as I tended the vegetables, and on really stellar writing days when chords and lyrics flowed like I had tapped into some song stream.  And I felt it with my Mom, when, for example, we used to douse ourselves in a variety of perfume at Dillards, and when we entertained people with our stories, each of us weaving in details to get the best reaction from our audience.  These moments are harder to find with her now because it’s hard not to get distracted by what I’ve lost or what I’m soon to be losing.

And I wonder how eternity relates to mortality, and how that relates to my mom.

In The Power of Myth, Joseph Campbell tells Bill Moyers, “I’ve lost a lot of friends, as well as my parents.  A realization that has come to me very, very keenly, however, that I haven’t lost them.  That moment when I was with them has an everlasting quality about it that is now still with me.  What it gave me then is still with me, and there’s a kind of intimation of immortality in that.” [282]

This strikes me as yet another of Alzheimer’s cruel paradoxes.

On one hand, having Alzheimer’s means that a lot of your past and ability to worry about the future is wiped away.  Being here now should be easier, but it’s not.  Without the context of all the stuff you learned in the past, now can be quite hellish.  I think that in order to really be in the now, you have to feel safe.  And safety is somewhat a learned experience.  Overtime, you experience something and nothing bad happens, you  feel safe.  But what happens when you can’t really remember that nothing bad happens?  I think about how frightened Mom is in the shower and how she can’t tolerate being damp, perhaps because for her, it’s like the experience suspected spies or terrorists have when their captures employ waterboarding.  They don’t know that they will actually through the ordeal of water torture.  They feel themselves drowning and their body screams, “Oh Shit!  I’m dying!  Do something.”  And they are powerless in that moment to do anything.

And it seems to me that much of Mom’s life is like this.  Anything out of the ordinary, or anything she can’t remember isfrightening.  I wonder how many times a day she feels the terror of not knowing where she is or who she’s with.  And I also get the sense that for her, being alone is terrifying — that without a familiar other there, she feels like she will surely die.  Who can be present with all that vigilance?

The other piece that disturbs me is the notion that being with someone has an everlasting quality — that idea that what being with someone then lives on in you so that there is something transcendent of mortality.  But what happens when Alzheimers wipes those moments away….   Does the essence, the transcendence still remain?



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It’s been about seven years since my mother’s memory loss became particularly noticeable. In that time, I’ve watched her become lethargic, angry, fearful and depressed. When she was first diagnosed, I held on my memories of the vibrant, creative, and adventurous woman I’d always known.  I suppose I was hoping that my memory of her would bring her back. As the disease progressed, my focus shifted back to the present, to help both of us function with what she’s facing now. In some ways this helps numb the pain of hearing her forget my name or watching her struggle to complete tasks most of us take for granted. It might even shield me a little when she tells me things like, “I don’t understand why my brain doesn’t work.” “I’m not good for anything.” And, “I wish I were dead.

But now, who she is today is all I have. When I think of her, I can no longer feel the presence of who she used to be. I can’t feel her laughing when I think about how we used to tell funny stories, tag-team style. I can’t feel her love when I think about how she used to hold me when I needed to cry on her shoulder. I can’t feel her spirit when I think about how she used to love to go on little adventures. I only feel her loss. So another cruel aspect of Alzheimers’ is that it hasn’t only stolen my mother’s memory, it has also stolen my memories of her.

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Sat. Morning.  10:00 A.M.  I’m in the cinema room at the gym.  I’ve come here to work up a sweat, clear my mind and keep my body in shape.  Usually, they play action movies in the gym cinema room.  Today’s film is Marley and Me a film about daily life with an incorrigible dog.  Most of the film centers around Marley’s destructive antics which are funny since it’s not your house he’s ripping to shreds.  But I don’t arrive in time for the funny parts.  I arrive just as John finds Marley laying under a tree with a twisted stomach.  The foreshadowing is clear.  Marley is about to die.  It doesn’t take long for the tears to stream down my face.  I could go to a different part of the gym but I don’t.   I feel like I am a captive to my tears.   I stay on the elliptical machine, running as fast as I can as tears stream down my face.

Marley makes it through the first emergency situation but his death is immanent.  I run harder.  When his gut twists again, my silent tears turn into sobs muted by the pounding of feet on treadmills behind me.  As John (Marley’s primary human) rubs Marley’s paw as Marley drifts into death, the pain is almost unbearable.  I am running at my top speed.  My pulse is over 160 and I feel like I am on fire.  It occurs to me that I am trying to run the tears away but they are not going anywhere.  No matter how fast I run, the tears  continue to stream.

My parents are visiting this week.  They are probably eating breakfast at my kitchen table this very moment.  So it doesn’t take a genius to figure out why this movie is affecting me so deeply.  The tears I have been holding about my mother are coming out sideways.  I resonate with Marley’s human John in his desire to hold on to Marley as long as he can one one hand and his desire to protect Marley from unnecessary suffering on the other.  I watch my mom fade in and out, a shell of the person she used to be.  I watch her try to maintain a semblance of independence against the reality of almost total dependence on my father and whoever else is around.  I watch her frustration at not being able to remember and her fear about not really comprehending what is going on, in the moment and in general.   My heart can’t hold all of this pain.  It makes sense that I want to run away.  But I can’t.  This sort of heart break is like your shadow.  You can’t run away from it.  The only way out of it is through it.  So, for now, I let the tears flow.

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We have rituals to deal with death.  Funerals help us wrap our brains around the reality that a person has died.  Watching the casket lower into the ground or holding the ash filled urn signals finality and gives us a tangible image of “dead” to hold on to.  Sharing memories about the person helps us think of the person as a memory rather than a presence.  Funerals tear us away from our ordinary world and all the distractions that keep us from feeling pain so that we have the opportunity to focus on our loss.  And they create a space where we not only have permission to publicly express  our sadness but are supported in doing so.  Funerals may be the only public settings where people are “allowed” to physically comfort each other.

We have no rituals to deal with Alzheimer’s.  There is no body to bury.  No ceremony to celebrate (or I suppose berate) the person who was before the amyloid plaques and neurofibrillary tangles started taking over their brains.  No place to get the emotional support to grieve our loss or be comforted – at least not by friends and family.  Instead, we are left to grieve and make sense of our loss alone.

Leaning on friends is awkward because they either don’t have a clue about what we’re going through.  Or they do understand and hearing us talk about our pain reminds them of their own.  Leaning on family is even harder.  They are often doing the best they can to get by and either can’t “go there” or “are there” and have nothing else to give.

And since there is no body to bury, nothing concrete to mark the shift in a public sphere, we are expected to “soldier on,” business as usual.  The world doesn’t stop so that we can take time to cry or rage at the unfairness of the situation or express the fear, guilt, shame, and other feelings that swirl around in our systems.  We are expected to function and produce just as if everything was fine.  It’s not like you can call the boss and say, “I can’t come in today.  I’m experiencing grief and need to resolve it.”

It’s not just the outside world that pushes us to “soldier on.”  The achievement oriented culture we live in has trained us to measure our worth by what we’ve produced.  We create mental lists of what we need to get done and impose strict deadlines for meeting our goals.  Failure to accomplish everything on our list is a sign of personal failure.  Since these mental “to do” lists are rarely realistic, we usually spin in a frantic cycle of trying to get things done and beating ourselves up for not meeting our goals.  If “take time to grieve” is not on the list, (and it seldom is) we don’t give ourselves permission to feel the feelings and let them go.   Instead, we try to push the feelings away.  But they don’t go away.  They just float around under the surface, leaving us feeling depressed or numb and very alone.

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Our culture has created guides to help us navigate the markers that correspond with youth.  We have books that tell us how to deal with baby’s first tooth and baby’s first step.  Magazines and TV shows tell us how to deal with our child’s first day of school, the first band concert, the first date, the first heartbreak, the first drunken escapade, the first job, the first college acceptance letter, the first final exam, the first college degree.  These markers are, if not exciting (it’s hard to imagine being thrilled at the sight of your teenager staggering across the living room) at least offer promise that things can get better if you can get your child back on course.

There are no real guides to prepare you for the markers associated with Alzheimer’s.  Once the markers hit, there’s no hope for things getting better.  You can read the lists of signs and symptoms and even go to a support group, but when stumble over or slam into the markers, you’re own your own.  Denial may be the only useful tool you have, and it only lasts so long.  For example, the first time Mom forgot what day it was, I just chalked it up to “senioritis.”   I used the same excuse the first time I had to help her fill in a sentence.   The time we got lost on the way to the library, I was just about to slap on that excuse, until I saw her cry.  “Senioritis” makes you laugh.  This was something different and it hurt her.

What do you do when you’ve run out of denial?  You have to sit with the feelings until they move through you.  This may take years.  I still remember how my heart broke the first time she forgot to send a birthday card.  She’d never, ever forgotten my birthday so I knew this was a sign that she was slipping away.  And I felt like someone ripped my heart out and put it in a blender.  I was scared of losing my mother.  I was angry at the Alzheimer’s for taking her away.  And the sadness felt unbearable.

The first time I coerced her into taking a shower sent my heart right back into the blender, same pain but with some different feelings thrown in for good measure.  I’d  been home a week and she hadn’t bathed since I’d gotten there.  It was summer and she was, to put it mildly, ripe.   She’d said the night before that she’d take a shower in the morning.  When lunch came and went and still no shower, I pushed.  We sparred.  She said she’d already taken a shower.  I pointed out that she hadn’t.  She got defiant.  I got honest and told her that she stunk.  She cried.  The fact that she took a shower did little to assuage my guilt.  I’d been mean to my mother and I couldn’t take it back.

With Alzheimer’s, it’s not just what you can’t take back that’s hard.  It’s bearing witness to what you can’t take away.  Last Christmas, Dad sent me in to help Mom get dressed.  I walked into the bathroom and found her drying off with a wash cloth.  I handed her a towel which I suggested might work a little better.  She took the towel but instead of thanking me, sat down on the toilet,  said, “I can’t do anything right.  I hate myself.  I wish I was dead.”  I stood there, speechless, and watched her cry.  I’d never had to face my powerlessness so directly.  There’s no joke you can tell or pill you can fetch that will take away this pain.  Words felt impotent against my mother’s misery.  All I could do was reach out and hug her, wrap her in my love, and hope that this would be one of those moments she forgot.

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I was rummaging around the attic the other day and found my box of photo albums.  Seduced, I picked up the album on top — the college years.  I laughed as I flipped through page after page of smiling friends and college hijinks.  It’s hard to believe I was ever so young and naive as the me in those pictures.  Scattered between my college friends I found a few pictures of my family.  Dad sitting in the chair with the cat.  Mom and Dad smiling behind the poinsettia plant.  Dad carving the turkey.  Mom sitting next to the Christmas tree.  Mom and Grandma with Grandma’s cat.  Mom on her exercise bike.  It’s this picture, Mom riding her exercise bike, that grabs me.   This picture captured our connection.  She’s looking right at me, smiling.  I imagine that I had just said something to her and she was acknowledging me.  I feel her presence – the fourth dimension in a two-dimensional snap shot.

Before the warmth of this memory settles in, I remember the here and now and my heart shatters all over again.  The mom in that picture is gone.  It’s not just that she’s got more wrinkles or that her hair is completely gray.  Along with her memory, Alzheimer’s has eaten away her vitality and stolen the connection we had.  It’s taken away that fourth dimension and left me with a two-dimensional mom.

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Watching my mother struggle to retrieve memories that have gotten lost in the tangles…

Witnessing her frustration about her inability to do things that she used to do…

Sensing her fear and confusion when she can’t see through the fog in her brain and doesn’t remember where she is or what she’s doing…

Hearing her beg me to stay with her as she showers and telling me that she’s worthless and wishes she were dead…


The pain is almost unbearable.

The pain is more than empathy – – more than imagining how frustrating and terrifying it must feel to not remember.

It’s more than the agony of helplessness in the face of her suffering.

At the pit of it is the pain of the severing of the bonds of attachment.  This pain is brutal and terrifying.  It feels like you’re going to die.

John Bowlby, the first theorist to talk about attachment,described attachment as a “lasting psychological connectedness between human beings” (Bowlby, 1969, p. 194).  Children who experienced significant attachment relationships with a caregiver have a sense of security that allows them to feel safe to explore the world.  Harry Harlow’s research with the monkeys suggested that babies needed more than just safety and security – they also need love.  Sue Johnson, a researcher and couple’s counselor from Canada takes these ideas a step further.  She looked at attachment as it extends into adulthood.  She argues that physical and emotional isolation (the severing of an emotional bond) is traumatizing, so much so that the brain actually codes it as danger.  The pain people feel as Alzheimer’s takes away their loved one is the pain of a slowly severing bond, the primal pain of feeling nurturing, soothing and protection being ripped away.

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