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.

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.

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.

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.

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.”

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.

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.

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.

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.

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.