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I Love You More

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.”

“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.

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.

What I Miss

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.

Nowhere to Grieve

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.

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.

Firsts

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.