It is never easy watching a parent die. And even more difficult watching them suffer a slow and painful death that could take their life tomorrow or take them in another 40 years. And what can make it even worse, knowing that you will likely achieve that same level of agony at some point before you die, because you too have that same medical condition. But hopefully you will know you can choose your death, even if you can’t choose the manner you are delivered to it.
I remember going with my mother to the first pain specialist in 2001. “You have Parkinson’s,” the doctor said. Parkinson’s explained her stuttering and shaking, but it didn’t explain the random pain and the doctor wasn’t sure either. He handed her a prescription for Neurontin 5 mg to be taken once daily. “We’ll see if this helps with it and address it further if this doesn’t resolve the symptoms.”
It was four years, three doctors, one new diagnosis, and many more medications added later before the pain specialists managing my mother had finally decided that the Neurontin was not the appropriate drug for her medical conditions. But at this point, there was one problem. My mother had been on it so long and was increased so many times that her dosage now sat at 800mg daily.
The doctor who had recently taken over her care stared appalled at her. He was concerned that the previous doctors allowed her to remain on this medication for so long without trying a different one despite the fact it obviously was not effective. He requested she try to use a half dosage of Neurontin and supplement with a potentially more effective new medication. She tried. But after 14 hours the agony from her lack of Neurontin and the side effects from the new medication nearly drove her to suicide. She pleaded I call the doctors because her body hurt so bad from the pain that she feared she would not be coherent enough to express her needs to the staff. I did so and they promptly stopped trying to alter her medicine regiments. It has since become a “treat the pain and sedate the soul” until the time comes. My mother lives out of a little box filled with pain pills and antidepressants to get day in and day out.
Holidays, she will visit the family for maybe an hour and then she is spent, emotionally and physically. She fears the burden of her presence on the family will bring others down. So she returns to her small apartment where she keeps her gun and her medications to keep her from using it. I’ve watched my mother go through tests, experimental procedures, and excruciating pain for the last 8 years. She has given up. And now I have it.
The biggest differences between her and I. She was improperly treated by doctor after doctor; we knew the proper precautions to avoid triggering mine or at least advancing it. She was one of the first people to really be treated with many of the experiments’ now known to make the condition worse; I have had a few years to have results of the tests be published to research online. And lastly, my mother fears being a burden on her family and would sooner be dead to us now while she still lives than feel she is causing us despair seeing her deteriorate. I don’t care if my family feels that way, because those of my family and friends who really care will be there as I will always be there for them. Even if I can’t physically do what I once could have.
I know my mother is going to die. And it might seem odd or maybe uncaring, but I hope it’s soon. The doctors are giving her so many pills, that my mother is barely a human anymore. I can count one of three things each time I try to call my mother; she’ll be pushing herself too hard because the pains subsided for a few hours, she will be exhausted from the pain from fighting the atrophy of her legs trying to use them, or nearly dead from taking a medication at the wrong time one of these times. I just hope that when she goes, it’s not because of the pain and because of the fact her body was done. I count each day as one more my son has gotten to have with her and one more he will have with me.