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Posts Tagged ‘memory’

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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Mom and I have a game.  At the end of every phone call, we have an “I love you” contest.  In the first round, one of us says, “I love you” and the other says, “I love you more.”  In the second round, one of us says, “I love you all the way to the moon” and the other says, “I love you to the moon and back.”  In the third round, one of us says, “I love you to the moon and back and around the dumpster” and the other says, “I love you more than that.”

When we play this game, she sounds so vibrant, so alive, that the fact that I she couldn’t remember the name of the town she grew up in fades into the background.  And when I remember what she’s forgotten, the fact that she still remembers that she loves me more feels more precious than a handful of diamonds.

I’ve heard it said that one of the silver linings of being sick is that it makes you appreciate the miracle of feeling well that we so often take for granted.  Perhaps one silver lining of Alzheimer’s is that it makes you appreciate the memories that are there when so many are gone.  The fact that “I love you more” is what Mom remembers makes me love her “more than that.”

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I miss my mother’s vibrancy.  She always seemed so ALIVE.  She laughed and cried freely and when she was mad, you felt it — even if she didn’t say a word.  (Especially if she didn’t say a word.)  And she was sort of like the Energizer Bunny — always going, always doing.  

Her middle name was Gene.  Dad used to say the G really stood for “go.”   Someone would call and say, “Billie, do you want to go _____.”   My normal response is to assess all the things on my to do list and renegotiate for a different day, but Mom would just say, “What time are you leaving? ….  Oh, sure, I think I can do that!”  And off she’d go.  Note that the invitation could be to go down town, or to go on a road trip.  She went to music clubs and tatoo parlours.  The only invitation she consistently declined was for a trip to the snake farm.  Her fear or hatred of snakes was stronger than her curiosity about the type of people who would work and visit there.

A number of years ago, before the Alzheimer’s took over, we were floating around the pool with some of her friends and Ida said, “Hey, there’s a meteor shower tonight.  Wanna go?”   Dot and Mom both said yes.  I had my sights on sleeping (they weren’t even going to leave until after midnight) but she was so excited about the adventure, I couldn’t say no.   When someone else at the pool asked, aren’t you afraid of going out into the country by yourselves, my mom said, “No, Dot’s got a gun.”  I thought it was funny and went home to take a nap. 

Mom woke me up around midnight (she apparently didn’t need to sleep) and we crawled into Dot’s car.  (OK I crawled, mom all but hopped.)  Off we went to look for meteors.  We found a quiet spot in the middle of nowhere, miles from the city lights that would have dimmed the view, pulled out blankets to lie on, Dot pulled out her gun and we watched.  They were fine.  I was a bit nervous.  Somehow being around an armed 80 some odd year old woman….  I just hoped she didn’t feel the need to use it.  We lay there awhile, watching the sky.  They giggled like school girls, telling jokes and funny stories.  The fact that we only saw 3 or 4 meteorites didn’t seem to bother them much.  They filled out the sighting list, noting that we’d also gotten to look up at the stars and had seen a w a few satellites and a couple of bats.  We’d had an adventure.  What else can you ask for?  (I suppose, “nothing got shot” was icing on the cake.) 

Now, her vibrancy is gone.  It bubbles up every once in a while, but mostly she sits in her chair and naps.  Her “Yes!” in response to the question, “Mom, ya wanna go/do ___________” has turned into a “No.”  Her adventures now are just memories, and even those are fading.

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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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Yesterday, my memory crashed on the word mylar. The word popped into my head and I had no idea what it was or why I was thinking about it.  Last week I couldn’t remember Victor Frankl.  I had to look both of them up on the internet.  Mylar, it turns out, is a sort of polyester film.  I still don’t have a clue as to why it popped into my head.   Victor Frankl is a different story.  I was mapping out a lecture on philosophy* at the gym and was trying to explain Existentialism in a way that would grab my students’ attention.  With so much focus on death and meaning, Existentialism isn’t the most cheerful philosophical position, but Victor Frankl’s psychological theory brings Existentialism into perspective, especially when explained through his experience in the Nazi death camp.  I could lay out the basic elements of his psychological theory, but his name eluded me.  I finally had to look up the title of his book, Man’s Search for Meaning on the internet to retrieve his name.

A few years ago, memory gaps like this seemed insignificant.  They were frustrating but short lived.  I would think about Joseph Gusfield’s work on the temperance movement (he wrote Symbolic Crusade:  Status Politics and the American Temperance Movement) but couldn’t retrieve his name from my memory bank on the spot.  A few moments or hours later, I’d remember Joseph Gusfield and life would go on.

That was before it really sunk in that my mother had Alzheimer’s.  Now, I freak out when I forget things like mylar, Victor Frankl and Joseph Gusfield because I think it might be a sign that I am developing Alzheimer’s like my mother did.  I know that adult children whose mothers have Alzheimer’s have a higher risk of developing Alzheimer’s themselves.  And there doesn’t seem to be any conclusive research on how to avoid or prevent getting Alzheimer’s (other than dying young – before the plaques and tangles form in the brain – not a desirable “cure” in my book).  I know that it’s silly, but I try to keep the memory loss at bay by looking up the words and names that I can’t remember and repeat them over and over.  Sometimes it feels like my life depends on being able to remember Victor Frankl and the other things that slip my mind.

I remember how depressed Mom became when she got the results of her psychological evaluation.  Her father had had dementia and she had seen how it affected him.  By the end, he was sort of like the living dead.  She saw the future she was headed for and there was no comfort to be found.  My memory lapses give me a similar glimpse into my future and I am terrified.  I am afraid that someday, like her, I won’t be able to remember things and will be frightened because I don’t know where I am, frustrated because none of my clothes fit anymore and depressed because I have no motivation to do anything but sit around and nap.

*By day, I’m a college professor.

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