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.
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.