Disappearing behind the wheel

Ever since I was a little girl I had the same nightmare about my Mom:  As she was driving me home and we were passing a church in our neighborhood, I would suddenly realize that my Mom had disappeared behind the wheel and I was alone in this car.  In a car going full speed.  I would frantically look around and no one was in their yards, on the road, no other cars were in sight, I was alone in a car, desperately looking for my Mom to keep me safe from crashing and then suddenly I'd wake up.  The stress, abandonment and fear from that dream usually would linger for the rest of the day.

I've always wondered what that dream meant.  I can't help but correlate that with my current situation now.  While the people around me are flourishing with growing families and planning for their future I feel frozen in place, watching my Mom and childhood slip away alone.  Granted, I'm not completely alone, I have many wonderful friends and gentleman friend who I know will not hesitate to listen, help and support me if I ever need it from any of them.  I am extremely blessed for that but yet, I keep them all at arms length at times.  I feel separate and alone in coping with the slow loss of losing my Mom in comparison to their warm, loving and full homes.  I would rather take in their warmth than burst the bubble of the compartmentalizing I struggle to manage every day - I swear it is built of thin ice.  If I speak of it too often I'm afraid it will collapse.

I watched my brother's wedding video last night to commemorate his 10-year-Anniversary with his wife and was shocked to see the Mom I once knew.  In this video she was young, vibrant and constantly smiling.  She was playing with my oldest nephew, who was two and a half at the time, and she was glowing.  Dare I say stunning.  I never realized this about my Mother - that she could glow. That her smile was so bright and full of love. And she was beautiful.

Growing up with my Mom was one of my biggest challenges yet, in hindsight, one of my biggest character builders.  She was a complicated woman filled with an overabundance of stress and sensitivity.  She was quick to react instead of thinking first.  She was quick to get hurtful and irrationally angry.  She wanted to be loved so much yet could be quite rude to others.  She could be embarrassing.  She wanted our family to make memories and be together so much that the weight of her force would cause huge fights usually with her storming away in some fashion, disappointed that her expectations didn't come to fruition.  Yet, she also was capable of being so much more.  She tried so much to be the woman she was meant to be absent of hurt, fear and stress.  I blame her roadblock to self-actualization on her horrendous, loveless childhood.  But I digress.

I know now her original design was to be loving, compassionate, humorous, laid-back and joyful.  My resentment and hurt from being her daughter growing up prevented me from seeing that and truly appreciating her then.  I came to a point in my teenage years that I was sick and tired of carrying the burden of being angry with her so I channeled her quirks into opportunities for humorous situations.  Even though our relationship was still strained and difficult I was able to soak up her good moments (and even bad moments) and use them to tell good stories and laugh with her.  To develop a dark and twisted humor. To develop sarcasm.  To make myself laugh and be happy.  My favorite stand-up routine were always my "Mom Stories."  Stories that I can no longer tell.

Perhaps a lot of that coping skill now translates into my current job.  A descriptive paragraph that I will omit to keep my own promise to myself that I would never talk about my job on the internet.  But lemme tell ya, coping skills and compartmentalizing are in overdrive with some days I have at work.  There is a lot, a lot of heartache out there that I am helpless to stop and sometimes, by informing them of the truth, only makes their pain worse and me the object of their transference.  You laugh or you cry.  I am trying to laugh whenever I can.  But I digress.

It was only 10 years ago that my Mom was vibrant, happy, talkative and joyful at my brother's wedding.  I could not have imagined the place she'd be in just 10 years later.  It's like she's aged 25 years in a decade.  She is so much older, gray, tired and slipping away now.  Growing up she'd ask you an average of 50 questions when you walked in the door, (especially to friends who called for us on the phone) now I'd be overjoyed if she could just complete one question instead of stopping mid-sentence in a stare.  I always wonder - is she finishing the question in her head?  But I'll never know - dementia can be as mysterious as the sea.  Our time together is relegated to mostly sitting in silence or me having mostly one-sided conversations.  She does have some auto-responses like "No" (her favorite) or "Why'd you do that for?" Or "are you kidding?"  or "Please don't." She struggles to walk. She struggles to eat. There was a time after she suffered from a long bout of pneumonia where her condition plummeted so badly that the staff at her nursing home had a "End of Life Care" meeting with our family.  I remember as they were explaining all the life-saving measures that would be incredibly painful, I looked at my Mom, not expecting an answer, and asked "What do you think about that Mom?"  She answered quite innocently "I think I'll be OK."  I wept after that.  Just a few minutes earlier she had asked "Are you sure I have kids?"  I immediately thought of the empty car from my dreams.  My Mom had disappeared from the driver's seat and I was alone sitting next to it and the world won't stop when I need it to.

Watching her slip away feels like watching my childhood slip away.  My memories of growing up are disappearing with her.  I find myself looking at old pictures more and more now trying to regenerate the memories that I can no longer share with my Mom.  I can no longer hear about those cute and funny stories from my childhood and my family that only she knows best. Or only that she knows at all.  If only I knew earlier in my life how much I'd miss talking with her and having these conversations that I could only have with her. I find myself watching my nephews and my friends' children now and watching how lucky they are that their parents are loving them, making their moments special and documenting it all. I try my hardest to fill myself up with the sweetness and joy of their childhoods instead of mourning mine. 

 I feel as though my safety net of self is disappearing with her.  I feel the vulnerability and sense of feeling lost losing my Mom.  When I would get lost in a department store at a young age I always remembered the relief when my Mom somehow found me.  She always somehow found me.  And now she's disappeared.  And I am alone in the car again, with no one driving and no one else in sight just like my childhood dream.  There is no waking up; I have no choice but to see where this road takes me.  

The Long Goodbye

I remember I really stopped writing this blog when my Mom found it and I felt a vulnerable betrayal as a result - the answer was that I empowered myself by shutting it down.  Another display of my life-long struggle to keep my Mom at arm's length and shield her from my life outside of her.  That, and this is freaking time-consuming!  It really is - to try to be witty and use good grammar as you tell a story is time consuming.  My butt is already falling asleep.
Yet, as I sit here with tears rolling down my face I feel compelled to just get something, anything out of my system.

After months, even short years, of picking up the signs here and there that my Mom was aging too quickly everything came crashing down on New Years Eve when she was taken to Good Sam and spent a week in ICU.  The terrible reality that my family had been avoiding had made itself evident:  Mom had full blown dementia.  Worse, my Dad's secrets of how bad my Mom really was came into full light and the weight of the world that was on his shoulders were all slapping us in the face.  How he endured her daily care and trying to keep her dignity intact for so long is beyond an emotional and physical prison that I could imagine.  We had our suspicions of course but he was extremely guarded of us being at their house and what we were allowed to see of it's disarray as a result of his daily struggle with her.  I remember being angry that he wouldn't ask for help and my stubbornness from that anger cut my parents out of my life further.

The Doctors were matter-of-fact:  She can not go back home.  It was what my Dad needed to hear - to be given permission that there is no way that he could endure this on his own any longer.  They say caretakers' lives are greatly endangered because they give so much to the loved one they try to take care of.  I really don't know how much longer my Dad could have taken.

Years ago my Mom used to help me clean my place.  Don't judge me!  It was a symbiotic arrangement:  I got my place clean and she felt needed by a daughter who worked hard to push her away.  And here I am today - I had a wild hair to clean my place this afternoon and as a result the gravity of what's happening with my Mom hit me.  I avoid cleaning at all costs.  One could say I feel lost without my Mom just here, helping me, annoying me with her suggestions that actually worked.  Worse I would catch her snooping in my stuff if I didn't keep a close eye on her!  It was the cost-benefit situation of course and it was a usual routine for us. If I played my cards right she'd even pick up groceries.  My Mom stopped driving a few years ago after getting lost on the way home too many times scared her.  She kept on saying "I'll start driving again in the Spring." but Spring was long gone for her.  We all knew it but she avoided it the most.  And our times of cleaning together stopped.

All these key little moments pop into my head now when it was evident that my Mom was no longer herself and a slow deterioration had taken over her mind.  The time when she was painfully shy and withdrawn at my best friend's wedding - which usually would  be a perfect opportunity to embarrass me and others by talking to as many people as she could and ask them inappropriate questions.  Then there was the time when she bluntly told me that her Dad died and really...that whole process of preparing for the funeral she just seemed too relaxed for her.  Almost checked out. Or the time when I saw her try to get something out of the oven without pot holders and burn herself.  I pretended not to see and she just quietly left the kitchen alone sucking on her finger.  I don't know if she was embarrassed, depressed or what in that moment. My Dad ended up taking the casserole out of the oven without a word spoken or the moment acknowledged out loud.  She stopped cooking.  She stopped being able to write her signature and then writing all together.

I can't imagine what it's like to know your mind is failing you and you can do nothing about it.  She used to tell me "Do you know how hard this is on me?  This feels awful." Usually spoken when the subject that she was scared to be alone without my Dad (she could not be without him ever); or she felt we were whispering about her; or just felt generally misunderstood by us.  I wish I could have those conversations back.  I would ask her anything, talk about anything, in retrospect.  Now when I visit her in the home she's been placed in she can no longer say that this process is hard.  Instead I see her struggle to make sense of where she is.  Sometimes she talks like she's at work and her boss walks by her room.  Or sometimes she thinks it is her home and she's wondering why my Dad isn't home from work yet. Sometimes he still travels for his job in her mind.  Or sometimes she just sits there, barely speaking except to say she feels weird and that something hurts but she doesn't know what.  The worst is when she feels lonely and lost.  She won't let go of your hand, she cries and begs for more hugs and tries to follow you out when you leave. I've had more hugs from her these past few months than I have my whole life.  The guilt is overwhelming while the head struggles to remind you:  You can't do anything about this.

Everyone in my family is adjusting in their own ways and I am comforted by how much we accept each other in our private way of dealing with this life adjustment.  We recently had Easter and it was a quiet, new experience not to have Mom there.  Saturday was at my brother's with his family and Sunday was at my sister's with her family.  My Dad and I traveled to their homes alone, on both days.  We both went home alone afterwards with the emptiness of not having Mom there with us all day.  So this is life now.  Holidays will never be the same.  I'm only 33.  I feel too young to be going through this.  To be going through the adjustment of losing a parent.  I feel a short pang of yearning when I hear my friends talk about their parents on weekends or holidays.  Or to hear their parents help them out with something.  Then I remind myself that the most detrimental thing you can do is compare your lives with others.  These are my life circumstances and that's OK.

My family and I went to a workshop one Saturday to learn more about dealing with dementia of a family member.  One brave woman featured talked about how it's the "long goodbye."  It is so true.  I find myself reduced to tears sometimes, shaking my head at myself because I should be stronger than this.  I deal with messed up life situations at work everyday so why can't I handle this?  There are just some things in life that can not be compartmentalized.  When friends ask about my Mom - what do I say?  What is the right thing to say?  Nothing I say will change things.  Nothing will take away the downward spiral that I have no choice but to accept.  A lot of times it is just not worth opening that door of conversation.  Although sometimes the door can't be closed.  My good buddy Derek and his wife were made aware of this when I didn't cancel my plans with him on a day I couldn't close that emotional door.  I showed up at their home in a fit of tears.  He's been my good buddy since I was 17 and he's never seen me like that (and that's saying a lot since I usually go to him about douchebags I've dated). I don't know what I can to do to shut that emotional door.  I don't know what to say or think or act or what anyone else can do.

I definitely didn't grow up with a typical Mom.  But she was my Mom.  And I found a way to live with her being my Mom.  I found a way to find humor and strength in her downfalls.  Not all the time of course and those are my downfalls.  She did not have an easy life - her family did not treat her kindly or lovingly at all growing up - but that's another story.  Two big things that can hit me hard about this situation is 1): you can't go back to so many moments taken advantage of and 2): my Mom no longer has chances in life.  She always wanted to go to Europe.  She always wanted to spend her older years with my Dad travelling the country in a trailer.  She can't watch her grandchildren grow up.  She never got to make peace with so many things.  We never got to make peace.  And I think the gravity of those regrets we have for her hit the hardest.