Monday, April 16

Things the grieving should never say but I am

Life goes on and we constantly adjust to the monotonous life without my mother's presence.  I have no idea how people can say that it gets easier as time goes on.  That seems such a lie and I cannot fathom how that can be.  At first, when she passed, I was relieved.  Selfishly I was glad that I could finally enjoy my family and not have the responsibility of caring for someone.  The numerous phone calls, the last minute emergency, and all the time that I spent away from my family were over and I was free.  Ironic how the realization that caring for someone is not as much as a burden as it seems at the time never dawns on you until you have all this time and no one to care for.  Then I was relieved for my mother, that she no longer had to suffer and watch herself disappear.  Finally I felt relief for my dad and brother.  They could move on with their life and start over.  How strange for all of us to realize that she was our life and we do not want to start over.  I believe all of us were so tired and burnt out that the first few months, we cried our share of tears, but we were OK. We missed her but were OK.  The days dragged on, weeks passed, and months went by.  The sound of her voice singing still fresh in my year.  Her contagious laughter but a moment away.  On the rare moment that I stopped my life to think of her (because to think of her meant agony-literally from crying-those headaches are the pits) I would have my sadness and move on.  I could detach and talk about her, call the autopsy doctors, talk to friends about her, and stay unemotional. 
It started very slowly at first...The teamwork of three, my dad, my brother, and me started to dissipate.  Kevin in his own destructive world alienated from us. Dad into his lonely despair. Me into my chaotic craziness of constant people. Each traveling down our own path trying to make sense of everything.  Not only did mom leave us, but our own worlds were no longer colliding but traveling to separate solar systems.  Then the triggers, the constant stupid things that brought you to your knees with emptiness and sadness.  The songs that she sang, a movie title, April fools day (that I could not even bring myself to acknowledge) my daughter getting her ears pierced, a mural on a building that was the same as a picture my mom once painting.  All of a sudden, every thing in every day reminded all of us of mom.  I could not escape her, thinking of her at a moments notice many times throughout the day. So much of our life has changed both emotionally, financially, mentally, physically; my entire life took such a twist.  It was not just the death of my mother that rocked us so hard.  It was the death of relationships with family members and friends that long forgot mom assuming that since she had Alzheimer's she no longer knew them.  One time, my mother was talking to someone and said who is this, I do not know you.  They took it literal thinking that because my mother had Alzheimer's she did not know them.  I wanted to rip the phone out of her hand and yell "She knows you, she is still her sarcastic little self telling you that she has not heard from you in so long that she no longer knows who you are"

Side note here:  my mother got her autopsy report completed and for those of you who did not hear, she had a Subset of Alzheimer's known as "hippocampal-Alzheimer's disease.This form generally affects the parieto-occipital and temporal regions, as well as Ammon's horn, are invariably severely involved by the pathological process (p.11). Delay & Brion also described "atypical" cases of AD that have more severe cortical involvement, mainly of the occipital, occipitoparietal or frontotemporal areas, which were either forms with diffuse involvement together with focal reinforcement or focal cortical forms (p. 90-91). These atypical cases are reminiscent of the hippocampal sparing cases described

What does this mean.  Well for those of you that have no idea about Alzheimer's, generally Alzheimer's affects the hippocampus.  How does that affect a person.  Well the hippocampus is the part of the brain that is involved in memory forming, organizing, and storing. It is a limbic system structure that is particularly important in forming new memories and connecting emotions and senses, such as smell and sound, to memories. So most people with Alzheimer's forget which is why people assume that all people with Alzheimer's forget.  Those with this rare subset, hippocampus sparing" do not generally forget memories and people.  Their body slowly shuts down and they are aware of this until they die. 

My mother knew she had Alzheimer's until she became unresponsive the last few days. She knew that every friend and almost every family member abandoned her and it crushed her.  It crushed us watching this people person, helper, and friend to anyone die without one friend still in her life.  She kept asking what did she do to make everyone turn from her and I became angry.  I am still angry because of this.  I am tired of watching what I say in case I hurt someone or make them feel bad. Well they should feel bad.  We had to feel bad watching those tears roll out of her eyes because she noticed people calling my dad instead of her. Ironic that she was the one with Alzheimer's and yet she was forgotten by others.  So to those of you who could not bear to see what my mother was turning into when you knew what she had. For those of you who it was too difficult to watch.  You not only gave up on mom, you gave up on us.  You left us without a shoulder to cry on, an ear to comfort...You turned your back on us.  There are some that gave up on mom before we knew what she had.  I do not blame you one bit.  Heck I almost did myself because she was that unbearable.  Please release the guilt you have.  And should I be writing any of this...nope but at 4 in the morning, I am not worried about it.  I am no longer angry, I am indifferent .  That is what I mean when I say so much has changed in who I am and in my life that I no longer recognize any of it.

Not to say that there have not been many many blessings and great thins happening in my life, there have been.  And on another day when it is not quite so late, I will devulge them.  Night Night


Anonymous said...

I find comfort in knowing that my loved ones who are just away, are all waiting for me to come and join the wonderful eternity without sickness, poverty, pain and heartache. That we will be joined together forever without a remembrance of the pain we know have. God bless you and your beautiful family. You were all a part of mine once upon a time.....and someday will be again!

Kimberly said...

such beautifyl words thank you

Cameron VSJ said...


I have a quick question for you regarding your blog, but I couldn't find your contact information. Do you think you could send me an email whenever you get a chance?




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