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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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Stolen Memories

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.

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.

Precious Moments

When someone you love has Alzheimer’s, you have to look for moments of joy.  Things that a few years ago would have made you frustrated or want to cry may become precious moments.

For example, my last visit home, my partner and I took Mom shopping.  The old Mom used to love to shop.  She could window shop for hours.  Now, not so much.  Now, she was more like the sulking teenager I used to be.  She didn’t like any of the jackets we found.  She grumbled that she didn’t need any new clothes because she had a closet full of nice clothes.  Despite the odds, we found something that worked and headed for the cash register.  And then it happened – a precious moment.  While we were looking for the sales clerk, Mom spied a turquoise sweat jacket and her eyes lit up.  We couldn’t say no!

The next store, we looking at earrings and Mom perked up.  She hasn’t worn earrings in several years so it was a bit of a surprise when she asked us if we’d get her a pair.  When we found a pretty pair of clip-ons, she looked so happy.  We put them on in the store and she beamed.  Every time she remembered they were there, she got happy all over again.  It’s nice to have moments like these to hold on to.

Forgotten

It finally happened.  That moment I’ve been dreading but knew would eventually come happened.  My mother didn’t recognize me.

She sat across the table from me and asked me if my parents were still living.  This is so much my mother.  Gracious.  Connecting, Reaching out. Here is a stranger across from her and she wants them to feel welcomed.  Wants to bring them into the conversation.  Wants to bring me into the conversation.

And it reminds me of her cure for depression or feeling blue.  When she was feeling down, she’d do something nice for someone else.  On Mother’s Day, for example, she and some of her friends would get flowers and drop them off at other women’s houses who either didn’t have children, or didn’t have children who “showed up’ in that way.

To my surprise, my reaction wasn’t about me, wasn’t hurt that my mother didn’t recognize me.  My reaction was for her.  I wanted to protect her from her mental slip.   Wanted to protect her from the pain of realizing that she’d forgotten her own daughter.  I didn’t want her to be embarrassed or frightened that she’d forgotten who I was.

And I had no idea about what to say or do to protect her from this pain.  Fortunately my father piped in.  He wrapped his arm around her and said something like, “Oh Billie!  We’re here parents and neither of us is dead yet!”  And he did it so warmly, and so tenderly that the moment passed almost as if it never happened, at least not for her.

And yet for me, it did happen.  And I have to sort out all those feelings of grief — for her, for me, for us.

 

The Need to Fix

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.

Amen.

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.

 

 

At the most basic level, we are pack animals.  Neurobiologically we are wired to be connected to others.  But somehow we learned to  individuate.  We learned to separate ourselves from others, to become fiercely independent, the captains of our own ships.  We learned that to need others or to be vulnerable was to be weak.  The message, “Just get over it” almost whispers in the wind.  We are allowed a day to grieve a loss and then we’re supposed to move on.

The human heart, with all it’s neural receptors, doesn’t work like that.  We are hard wired to connect.  When people we love, or people we are supposed to love, or people who were supposed to love us drift away, it hurts.  When we shut down in order to show the world that we have “gotten over it,”  a little piece of ourselves dies.  When we “fake it till we make it” and pretend that everything is OK when it’s not, we lose a little piece of ourselves.

The crazy thing is that there are countless people out there watching people they loved fade away, sliding into the abyss that Alzheimer’s creates.  There is no need to bear the pain of this loss alone.  I just sat with a group of people who, like me, were grieving the loss of a parent who was fading away due to Alzheimer’s or some other form of dementia.  They spoke of the anger at a universe or God who would be so cruel, the exhaustion of providing care and worrying, the fear of losing their loved one completely, their despair that they would never get the unconditional love from that parent, the anger at the disease, the frustration at the inability to clear up unfinished business, guilty about the wish that that parent would just die, and a sundry of other issues related to watching a loved one fade into the clutches of Alzheimer’s.  Even though it was sad and painful, it felt healing.  I felt like I wasn’t so alone.

I think the sense of aloneness, of uniqueness, of the idea that “no one else could ever understand” is the worst part – at least in this moment.   So I challenge you to find someone to share your story with, someone to share your pain with.  Find someone who feels safe and try it…  see how it pans out.  Let me know how your experiment works out.