Inside the Sandwich.

My mom is 78 years old.  She had the onset of Parkinson’s about eight years ago, before my son was born.  It has progressed over the years.  Now, she is bound to a wheelchair but lives in her own home with my father, who is 80 and in decent health.

Over the years, she lost her ability to swallow.  In January, she was placed on a g-tube.  All her meals are Glucerna through the tube into her stomach with a large syringe.  On the g-tube, her health improved.  Her mental alertness improved.  She no longer required insulin for her Type II Diabetes because her blood sugar normalized.

My mom is now mostly non-verbal.  I don’t know what it is about the Parkinson’s, but she does not speak very often.  She will say, “I love you,” and respond yes or no, but mostly, she just nods or shakes her head.  She is more lucid since being on the g-tube.

Tuesday night, around 8 p.m., the phone rang.  My mom could not move her left wrist.  It was limp.  She was conscious, but had just woken from a short nap.  I drove to the hospital.  From what I saw, she was still just as lucid.  She did not speak, but showed me, by holding up her limp wrist, that she could not move it.  I asked questions.  She indicated she could feel her fingers and had no pain.  She knocked things out of her lap, shook her hospital sheets at me and waved her hat with her good hand to tell me how frustrated she was at the loss of use of her hand.  I confirmed this with her and tears came to her eyes.

Deeply, that cut me.  I can feel how frustrating her life has become.  She cannot walk.  She does not speak.  Now, she can only use one hand.  Each tiny piece of her ability to control her life is further isolating.  She once was a proud businesswoman, owning two hotels, always talking.  This was a woman who told me never to depend on anyone for anything.  Now, she is quiet.

At a dinner with my dad, in the day.

Still, when I showed her photos of her grandson, in the hospital, she smiled.  A deep, smile showing joy at his beauty, his innocence.  And his innocence and beauty are reflected back through her.  She too, is innocent and young in looking at him.

Despite her limitations, she still loves and jokes with with my dad who coos and “goofy” talks to her in some secret language only they know after 55 years of marriage.  She’s been frightened by the progression of her deterioration.  My mom, the matriarch, the boss, the queen, is still inside, if you look.

About 9:45 p.m., Tuesday night, a CT scan of her brain ruled out bleeding in her brian.  I have no medical training.  I do have enough background to know basic medical concepts and protocols.  I have access to Google and sought to figure out what might be wrong on my own while we waited.  What I found was that her problem appeared to be nerve damage.

Just before 10 p.m, the emergency room physician walked in and announced, “We have a decision to make.”  I thought, “What?”   It is not the first time I’ve been around the block with hospital staff over my mother’s life.  The last visit in January, they gave us the option of starving her to death and giving her morphine to end her life, instead of giving her a g-tube.  I had to argue with the five different professions over our choice to give her the g-tube.  It always starts with “We have a decision to make.”

The ER doc said he “had” to assume she’d had a stroke.  Within two hours of her stroke they could give her a drug that was high risk but could restore function to her wrist.  The risk was death because the drug un-clots everything in the body.  The chance of restoring function to her wrist was 50-50.

As he gave us these options, I felt myself physically shaking.  Why was I again, being asked to choose whether my mom lived or died?  Then, I was angry.  Angry that he’d give this “option” for a 50-50 chance of restoring function to a wrist to a high risk chance of death.  Both my dad and I said no.

She was then sent for an MRI to determine whether, in fact,  she had a stroke.  She was admitted to the hospital.  No one told us the results of the MRI done at 1 a.m. on Wednesday morning until Wednesday night at about 7 p.m. when we were told she did not have a stroke.  They said she probably suffered nerve damage!

I’m relieved, disgusted, grateful and tired.   Mostly, I’m bitter that all the medical “professionals” I have encountered in emergency care for my mother want to kill her.  Yes, I said it.  They don’t value her life.  They discount its worth because of her disabilities.  Does that sound familiar?

There are many special needs in the world.  There are children with ASD.  There are elderly persons who lose function.  The common thread that hits me, where I’m sandwiched, is the de-valuing of lives.

There is something wrong in the way the majority of people in the world view life.  In a media where youth and sex appeal is glorified and the aged are swept under the rug.  In glorifying “pretty” people and discarding the rest, whether it be based on color of skin, hair, eyes, religion, politics, disability, age, or sexual orientation.

Until people can stop passing judgment, until those who have followings quit saying foolish things that they don’t “mean”, we will not move forward.

When will it change?  With the Joe Scarboroughs, the 50 Cents, the Michael Savages, the Denis Learys, there will always be a fire to put out.  Those fires will always do damage and cause setbacks.  But even after they are smoldering or out, these fires will cause irrevocable harm by the ripples they put in the water.  Perhaps, not to an ASD child, or an ASD adult but by a basic de-valuing of life other than the life they see as ‘perfect’.  And, in that devaluing, spreading the “perfect person” myth.  It is that myth that destroys and permanently injures so many.

It is that myth that leads some doctor somewhere, to determine that someone who has a limp wrist might risk death to restore function rather than accept that change.

And that is absurd.


About solodialogue

I'm a lawyer and the mom of a 6 year old boy with autism. I work part time and spend the rest driving here and there and everywhere for my son's various therapies. Instead of trying cases, I now play Pac-man and watch SpongeBob. I wear old sweaters and jeans and always, always flat shoes to run after my son. Yeah, it's different but I wouldn't change it for anything. The love of my child is the most powerful, beautiful and rewarding aspect of my life.
This entry was posted in Autism. Bookmark the permalink.

21 Responses to Inside the Sandwich.

  1. what a beautiful post, Karen and such a loving tribute to your amazing mom!

  2. Flannery says:

    I would be angry too, and I would probably be crawling up administration’s ass with questions about why they would push that kind of risky option BEFORE doing an MRI.

    And it is disheartening. We don’t value difference, whether it be in the young who are on the spectrum, or the neurotypical elderly that have lost abilities. It’s a real shame.

    I really hope your mom is doing okay. She’s lucky to have you there, advocating for her.

  3. Allie says:

    What a precious daughter you are. Some people are quick to jump to conclusion and push aside even thinking of other options. It’s up to us to make sure this doesn’t happen to those we love.

    Does Tootles resemble her a little or is it just my imagination?

    • solodialogue says:

      Haha! My mom would steer you right if she had the chance, voice or not. We all love our parents whether they are with us or not. I cannot imagine how others have handled similar situations. (Toots definitely resembles my mom’s stubbornness! 😉 )

  4. I hate that devaluing of life by people who seem regard any form of disability or illness as a deficit. I would also be fuming that the choice you were given was also based on guessed and ultimately wrong information. Hope your mum is doing OK

    • solodialogue says:

      Yes, deficit is the word I was looking for. Those people don’t “get” it. Most won’t ever understand unless a deficit affects them in a very personal way. Strangely enough, when I was at the hospital and spoke to the attending doc today about her discharge, he actually told me it was a good thing we did not go with the drug offered! And thank you, my mom is going home today. 🙂

  5. Lisa says:

    This brings back some memories from the summer of 2010. An ill mother. Frustrating medical procedures and staff. The de-valuing of life…Your mom is blessed to have you fighting for her. Shame on the medical professionals who are so hellbent on making a person physically “whole” that they don’t see the bigger picture. I’ve lived that…and it was a nightmare.

    • solodialogue says:

      I was thinking of you during all of this and how strong you’ve been. I dread the phone calls. I never know when they will come or what will be said. It’s a difficult time. Thanks for understanding. My heart is always with you.

  6. I am so sorry you, your mother and your father are going through such a painful experience. Your mom is very lucky to have such a wonderful support system looking out for her best interests, especially considering how the doctors are handling the situation. Stay strong and continue to fight the good fight.

  7. savvyadvocatemom says:

    I am so sorry you had to endure this. We had some similar moments like this when my own mother was ill. She made it to 75. It will be ten years ago in September that she passed on. I am happy to see you appreciate and advocate for your Mom, and you have your Dad there to help you. Hugs.

  8. Lizbeth says:

    Karen, I’m so sorry it comes down to this within the medical field. All too often MD’s are called upon and they give their medical advice without regard for the individual right in front of them. After a period, I believe, some of them even forget they are talking about a living, breathing soul. They get so focused on the right protocol or the plan they implement they get downright nasty when you disagree. I’m glad you’re there for your mom.

  9. The medical field is filled with ups and downs — there are good ones and bad ones. I really wish my brother had been there to help you through the trip to the ER… he’s one of the good ones.

    It’s coming late, but I’m sending my strength for you and your family. Your mom is a beautiful woman and I know you are going to get her the best treatment possible.

  10. Oh, Sweet K, so much going on. I did not know. My heart goes out to you. I liked seeing your mother and father together, and I am glad you shared this all, so we as readers and friends know. How hard these years must be. My grandmother had parkinsons. I remember the effects. Huge hugs of support. Scary time you’ve had. Sam

  11. This must all be very difficult. It sucks when the people we are forced to trust with our most precious people when they are at their most vulnerable are the same people who do not fully value them. I wish for you strength in getting through this.

  12. My heart goes out to you and your family. You have your hands full. It is fortunate that you are able to advocate for your mom. So often, we trust in our doctors to help us make the best decisions. Unfortunately, that is not always the case. Much strength to you.

  13. eof737 says:

    I ma so shocked t the way they keep badgering you to end her life…. Outrageous! Karen, know that you are your family are in my heart and prayers… This is a very touching post.

Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s