I’ve seen a lot of suffering in my life. Quite often I’ve had a front row helplessly watching as people have struggled with illness (usually cancer) till there was nothing left of them to struggle with. Currently, my wife’s mother has been diagnosed with ALS which is terminal. I don’t have much problem with the dying part. We’re all going to die and that is sad enough, but it is the suffering that often comes before death that I find so hard to bare.
My mother, on the other hand, is not terminal. Physically, she is great shape and she is not that old. But mentally she is tormented worse than anything I have ever witnessed. My heart aches for her, and I wish so bad I could end her suffering. Nobody is really sure what’s wrong. She’s been to some of the best psychiatrists and hospitals in her area. Everybody has their own opinions, diagnosis, and suspicions, but nothing is helping. The hospitals uually end up trying to diagnose her with dementia so they can pass her on to the nursing home and be done with her. But finding a nursing that will take her is not an easy task and its even more difficult to find one that will keep her.
We’ve been through this several times over the last decade. I’ve actually lost count as to how many times. As I said, we are not sure what causes it, but each time she starts getting delusional, we know she has a urinary track infection. She is also a very brittle diabetic (type 1), which really complicates everything. She usually has to be hospitalized and each time she is, the hospital just makes a bad situation even worse before trying to discharge her. This last time it took a court order for the hospital to even admit her. And each time a new doctor basically starts over from scratch. It is sickening.
It’s one thing when the hallucinations begin and she may think she’s some sort of messiah or a demon depending on her mood), but it gets so much worse. I’ve seen her go for days sobbing, and I do mean sobbing not just crying. She walks around like a zombie completely lost and confused. She can get very mean and violent which scares all the patience. One time it took 5 police officers to get her in the car to go to the hospital. I’ve seen her ripping at her skin and screaming because she is convinced bugs are eating her alive.
Recently, I was told how she was screaming and flopping around on her bed convinced that she is being raped. It reminds me of the old movie “The Exorcism” which scared me so bad as a child. Her head my not spin around, and she doesn’t speak in other lanquages, but the anguish and unrelenting torment is just as real and heartbreaking to watch or even hear about.
This usually last a couple months, costs tens of thousands dollars that she has spent her life saving, and then slowly she gets better. She’ll go on living just fine for quite a while, and then it’ll come back all over again, and the whole process will begin again.
I guess the most comforting thing about it is when it’s over she doesn’t remember most of it. But she does remember things which are distorted from reality, and this may cause her to be angry at family who have tried their best to help her.
I haven’t been there for this episode because I live 500 miles away now, and it was her request for me to not be involved. That, of course, doesn’t make it any easier. I am so frustrated with hospitals who take her money and do nothing but cause harm. I feel a sense of shame that I can’t be there. I feel hurt that I’m not wanted there, but most of all, I feel helpless do change the situation.
I am appalled by the mental health help available in this country. Most people are not aware of how bad it is until they see a friend or relative having issues. There are hardly no long term fascillities and quite often the only help offered by the most educated people involves doing little more than prescribing drugs. If that doesn’t work, they will give more drugs.
I think we all dread the day we our parents pass from this life, but seeing the suffering is so much worse.