Help for Healing

Bitter & Sweet, living daily with grief


4 Comments

Is It Me???

As I continue the drama of finding Dad the care he needs/wants, I have been astounded at the majority of medical professionals we are dealing with. I say I know these things, but when I am actually interacting in reality with it vs. speaking theoretically, I can’t believe things are as backwards as they are.

While most people wouldn’t say they believe this, in practice they betray they do. I am realizing that even medical peeps hold to the idea that every person wants to live as long as possible. If they don’t, then there is a mental illness (like severe depression) or they are “not of sound mind.”

Dad has literally been badgered repeatedly even though he has been crystal clear and actually has it in writing on every kind of medical and legal form possible.

Are you sure you don’t want an antibiotic?

Do you understand you may die from infection without an antibiotic?

Over and over and over again. This week’s appointment resorted to actual bullying and attempted manipulation. Dad stood his ground and I eventually exploded at them. The doc responded with:

“This is not medical care in America. American medical care does not work like this.”

I know palliative care is relatively new outside of hospice, but I can’t believe he was serious. He is even young. Uneducated, uninformed and therefore treating patients unethically.

Caring for a loved one with a debilitating disease, eventually losing them, etc. is so unbelievably exhausting and heartbreaking. But dealing with this nonsense repeatedly is beyond maddening. I literally shake with anger and frustration. No idea how to fix the mountain of an issue. How can we change facilities when the doctors don’t get it? And how do we change doctors when they are trained to believe death is failure?

Systemic issues aside, I have my father to care for. Please keep him and my exhausted family in your prayers as we attempt to navigate an incredibly complicated set of diagnoses with treatment options that are Catch-22’s at best, in a system that is utterly broken and unsupportive. What a sentence that was.

One moving, profound (to me) bright spot. Frankie turned 16 this week and asked me a ton of questions to try to understand what is happening with his grandfather. He absorbed the horrible information and asked for clarification that indicated that he indeed understands the depth of the problems and their significance.

He asked if Grace, his and my doctor, would be able to help Grandpa. I said that she is an excellent doctor and would respect his wishes but is unable to take on any new clients. He thought for a moment and said, “Mom, why don’t you and I give her up so she has room for him?”

I cried later in my room. I love that kid. He tries to pretend he’s selfish and uncaring because he’s a teenager. He’s not fooling me. He has an amazing heart.

Give yourself some time to think about these issues for yourself.


2 Comments

Flashbacks

Sometimes we experience things in life and it becomes a trigger for something that happened in our past. If we are educated about triggers, we may be completely aware that it is happening. Having insight though, doesn’t always change the intensity of the experience.

Last year about this time of year, I did a series of blogs on the mental health system based on my experiences with my daughter Emily. The purpose was not bash the mental health or medical system, but just to share my experiences in hopes that it would be helpful someday to someone, and who knows? Maybe a small, tiny pebble of change might happen in the large mountain that needs to be moved.

Recently, I had another experience and I spent the morning being painfully aware that I was reliving that experience again. The details are different of course, but there are two things happening inside of me that are so real I could touch them.

First, is the utter helplessness and powerlessness I can feel as a human being. It is so strong it makes my head spin and it is maddening. I found myself again knowing what someone needs, but also knowing that I had no idea how to help her get it. She has been in and out of the mental health system for much of her thirty years of life. In my (professional) opinion, she has not ever been properly diagnosed and therefore not ever properly medicated. She re-lives her self-destructive cycle over and over again and then is filled with self-loathing because she can’t change herself. She has been decompensating at an accelerated rate over the last month and has become a danger to self and others. There is a spouse and a beautiful newborn in the mix.

There is literally no system in place to get her what she needs. She needs a very thorough evaluation. That’s not how the system works. But I was in the ultimate catch-22. I couldn’t do nothing. I couldn’t. That would be unprofessional, unethical, uncaring. I couldn’t let her go home. Yet I knew that putting her through the system might not help either.

I spent three hours with her, canceled all my other sessions. Called the mobile unit. I was scared, sad, worried, sickened because I care so damn much. I didn’t just go the extra mile. I went the extra six miles, because that’s just what I do. And in the end, her last words to me before getting in the ambulance were: I never want to see you again. Now I will embark on several days of documenting everything that happens. I will spend hours on the phone trying to get a different experience for her. And I am painfully aware that my chances for success are slim to none. The only analogy I can come up with, is that going to work is like walking into a room and purposefully banging my head on the wall. But I have to do it. I have to do everything I can for her, even though I am doubtful it will help.

Utter helplessness and powerlessness. What the hell do you do with that? I know I am doing my best. I know it’s not my fault. That isn’t the struggle. The struggle is the anger and pain from watching a system go wrong and a very real person and family suffering because of it.

The second part, is dealing with the last words. I absolutely get it. I know she doesn’t REALLY hate me. I know part of that frustration and anger is directed at me because she feels safe with me. I get that part of it is because of the mental illness. BUT IT STILL SUCKS. And I went through that with my daughter too.

Here I am, being the single, solitary person who is truly advocating intelligently in her corner, and I’m the bad guy. Yep, that’s what my daughter did too. No amount of self-talk and insight makes it hurt any less. I go through rapid flip-flops of sadness and anger. Why do I do this? Why do I repeatedly do this?

Because in my world, in my brain, in my head, in my heart, I have no other choice. Without thought, I dive in and I love and care.

But I have to tell you… THIS is why I want to work at Family Video when I grow up. I’m not even kidding.