Posts Tagged ‘Grief’

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 learn how to manipulate or at least impact other people’s emotions early in infancy.  Before we can even speak, we start making a connection between our behavior and our care giver’s reactions.  We have to get people to feed us, change our diapers and pay attention to us.  Our very lives depend on it.

Its no wonder that many of us also get the message that we are responsible for other people’s emotions.  It’s such a short step from understanding that if Mom or Dad is sad or angry, they are not really able to hold and sooth us to thinking that if we want to be held and soothed, we have to help Mom or Dad feel OK, and another short step to believing that we aren’t OK unless our parents are OK.

The perk of this belief is that not only does it help us get our immediate needs met, it also gives us a sense of power and control.  We can make sure our needs get met by “fixing” those around us.  The catch is that people don’t usually like being fixed.  They usually rebel or put up a fight.  More troubling, that sense of power and control that comes from trying to fix others is an illusion.  We can’t fix other people.  We can’t make someone happy when they aren’t, love us when they don’t, exercise when they won’t, or healthy when they are ill.

Perhaps more than any other disease or ailment, Alzheimer’s rubs our noses in our own powerlessness and lack of control, in our utter and complete inability to fix someone.  For me, this means that I have to accept that I cannot “fix” my mother.  I can’t make her happy or help her “keep on the sunny side.”  I can’t take away her fear, sadness, frustration, anger or pain.  I can’t jump start her out of apathy or inspire her to go to exercise, do crafts, or take an interest in anything.  I can’t even make her understand that she needs new shoes because her old ones are worn out or convince her that it’s important to shower every few days.

Against the overpowering force of Alzheimer’s, there is no denying that the only person I can “fix” is me.  And, more frustrating still, that the “fixing” that needs to be done is an inside job.  None of the traditional avoidance strategies work.  I might get some temporary relief if I bury myself in work, zone out watching TV, crank my endorphins up at the gym, buy a new pair of shoes, drink a glass of wine or eat a bar of chocolate, but the painful feelings still come back.  The only way through the feelings is through the feelings.  The only lasting relief comes when I let myself rage at the Alzheimer’s that took my mother away from me, roar at the God who let this happen, scream out my fear, sob out the pain in my broken heart, and let myself feel the love of the Universe flow through me.

Most people are aware of the beginning of the Serenity Prayer by Reinhold Niebuhr:

God, give us grace to accept with serenity
the things that cannot be changed,
Courage to change the things
which should be changed,
and the Wisdom to distinguish
the one from the other.

But there is another verse:

Living one day at a time,
Enjoying one moment at a time,
Accepting hardship as a pathway to peace,
Taking, as Jesus did,
This sinful world as it is,
Not as I would have it,
Trusting that You will make all things right,
If I surrender to Your will,
So that I may be reasonably happy in this life,
And supremely happy with You forever in the next.


It is the second verse that gives us the answer for how to deal with losing a parent or loved one to Alzheimer’s.  We can’t fix them.  We can’t save them.  And raging, roaring, screaming, and sobbing only clear the space for an instant in time if we don’t accept life as it is, and fill the space we’ve cleared out with a deeper trust that ultimately, it is all OK, in the cosmic scheme of things, and fill the hole in our hearts with love.



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“It’s not about you.”  It’s a reminder to not take other people’s words, behaviors, and moods personally.   I’ve said this to clients in my counseling office thousands of times.  I’ve written about it in my “InsightOut” column that appears in Outlook .  I say this to friends who are struggling with relationship difficulties.  And I say it to myself when someone I’m with happens to be in a foul mood.

Even in my most egocentric space, I know that I can’t control anyone else.  I know that others experience our behavior through the lens of their past as well as what they are experiencing in the moment. But all this knowledge goes out the window when I talk to my mom and she’s not in a good space.  Some part of me gets hooked and I have to fix it, to make it better, to make her better.  Even though I know that lots of her anxiety, depression, and apathy are due to Alzheimer’s, some part of me feels like it’s about me and drives me to act from the sense that if only I could do or say the right thing, she’d be OK.  It’s that same part of me that gets stuck in the belief that if I could only make her feel better, I would feel her love wrap around me like it did before she started sliding away.

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It’s easy to miss the signs of love if you aren’t looking for them.  All my life, my mother encouraged me to take risks, to go off on adventures, to see the world, to create without any expectation of the outcome.  For years, I took this for granted…   this is just what my mother did, just who she was.  It’s only now that I see my friends angst as their kids set off on their own that I have a glimpse into how hard this must have been for my mother.

When I was five, though she watched every lesson, she willed her self not to intervene so that I could learn to swim.  I was taking swimming lessons and was terrified of drowning.  For the first few days of swimming lessons, I held on to the wall for dear life.  You could not pry my fingers off the ledge of that wall.  Finally, the head of the program took drastic measures and tossed me out into pool.  I floundered until I realized that I was floating.  I heard her tell her friends how hard it was to watch, how she wanted to run in and rescue me, to protect me from my fear.  But she knew that I had to do it, had to take risks and face my fear in order to really grow up.

When I was 15, she went through a similar tug as I learned to drive.  I had inherited a Ford Courier pick-up truck that, as my father would say, “had been rode hard and put up wet.”  Sometimes it would start.  Sometimes it wouldn’t.  When it did run, often as not, it stammered and sputtered and stalled.  And when it was running well, sometimes the brakes just didn’t work at all.  How she didn’t have a heart attach every time I left the house is beyond me.

I started college when I was 17.  I was incredibly naive and was ill prepared for the possibility that my professor would abuse his position.  She never let on that she was worried about his attention or intentions…   When he invited me to dinner, she came along as if it was the most natural thing in the world.  She just created reasons to go to school with me.  She’d make it into an adventure.  We’d go to the mall or out to dinner or to a movie, just the two of us.  The key is that she was there when I got out of class, a physical deterrent to any funny business on his part.  She let me figure out on my own that something was off.

When I was 19, I moved to Mexico for a summer.  She kept her concerns about the political unrest, corrupt police, Montezuma’s revenge and all those horrible things that could possibly happen to an American girl abroad to herself.  Instead, she focused on the adventure of it and her excitement for me to have the chance to explore new worlds.  When I was 22, I moved to London.  Again, she supported the adventure of it and didn’t burden me with her fears or the fact that having me so far away almost broke her heart.

Seeing her pain through the hearts of my friends, I get it now, that while sometimes love is about holding someone close to you, sometimes love is about letting go.

Sitting with her, witching her drift off to where ever it is that Alzheimer’s is taking her, I don’t know that I can let her go with the same sort of grace.  I don’t know that I can mask my grief and fear of losing her.  I catch myself clinging to who she was with the same tenacity I had when I clung to that wall in the swimming pool when I was five.  Only this time, I’m afraid of drowning in my pain.

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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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