Help for Healing

Bitter & Sweet, living daily with grief


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Dying in America

I have been reading this mammoth 506 page document referenced at the end of the blog. I admit some of it I read and get the general gist but I couldn’t parrot back the details.

Other times, I feel like I am reading the biography of my father. All of the death experiences I have had with loved ones as well as my own dealings with the medical system certainly resonate too.

It’s strange because I’ve built my business, lectures, etc. around my hard-learned life experiences. I’ve probably said a thousand times that our medical system is broken and I would have no idea how to fix it. Now, reading this work that was published in 2015, it is all there in black and white. I understand slightly better WHY it is broken. I understand a teensy bit HOW it might be fixed.

But mostly, even though it is incredibly validating to read that I actually do know what I am talking about, it is beyond maddening that this stuff is real. It is so lacking in common sense, it is incomprehensible things are allowed to exist the way they are.

Reading on the Kindle platform, I am able to highlight things as I go. I am also able to add “notes” that store in the relevant sections of information. I am like a broken record in my notes when I start with, “This is the like the time with Dad when…”.

There is a plethora of research to back up the usefulness and credibility of end-of-life care. Yet the statistics keep bearing out that most folks don’t die the way they wished. And those that get palliative care only get it briefly at the very end of their lives. Getting it months sooner would be ridiculously more beneficial to the patient and their families. And the big whammy? That actually costs much LESS money.

I have had so many clients and close friends lose people dear to them. Even though they know what I do, most people think they understand what is happening and what their rights are. I hear the horror stories afterward and I want to scream out loud. It didn’t have to be that way!

Yet this will continue, probably throughout the rest of my life on earth. My business won’t make it and my heart will keep breaking because folks (medical and lay) don’t understand death, and don’t understand there are other ways to let things happen than the way they normally fall out. In part, because we still just don’t want to talk about it or deal with it. And we definitely don’t want to feel like we have failed our loved ones in any way.

Even recently when I was at the statewide palliative conference, as I told my story those folks were saying things like, “How did you even know to call the Department of Health?” It makes me sick to think of how many people, every single day, are bullied into choices not in their best interest. And worse yet, they don’t even know they were bullied.

I just took a deep, deep breath as I was writing this. I guess I am equally as crazy, because even though I know all of this, I am going to keep going. I will keep trying and fighting and learning and reading. I’m not even sure why, I just know my passion for this doesn’t seem to be dying.

Pun intended.

Institute of Medicine. 2015. Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life. Washington, DC: The National Academies Press. https://doi.org/10.17226/18748.


1 Comment

Put Your Money Where Your Mouth Is

I have been lecturing on death/dying/end of life planning for four years now. As my dad has been going through medical issues, I find myself on the other end of that conversation. I hear doctors and nurses say things almost verbatim to the things I have said myself many times over. But it has been a good wake-up lesson for me to have it be so personal again. It’s been a while since the information has been so relevant and in my face.

A few weeks ago when Dad was in the hospital, we had to make some decisions. I have been anticipating this moment for at least a year, maybe longer. Yet somehow, I felt shock, blind-sided, unprepared. It was strongly reminiscent of what I felt when Tim passed. I had been at his side for months, thinking I was ready for the moment when he would go. But when they announced his death, I felt my knees literally buckle underneath me. I was shocked. How was that possible? Yet it was the definite reality I lived.

Dad made a decision to go palliative a few weeks ago. It totally makes sense. It’s a rational, reasonable decision. He has Parkinson’s, a degenerative disease that only gets worse. There is no getting better. After seven hospitalizations in 14 months, there will be no more tests, procedures, labs, hospitals, etc.. The decision was made through a very teary-eyed conversation between myself, my sister, and the nurse practitioner. She did an excellent job, just like I would have done in that position. She told us that Dad had spared us making tough decisions but clearly making his wishes known in his MOLST form. It was end of life planning working exactly the way it was supposed to.

Then why the hell is it so hard?

Now don’t get me wrong. Dad does not appear to be in the active stages of dying. But he is ready to when the time comes and wants quality of life until then. He could be around for a long time, no one knows.

My sister and I took him to see his dermatologist yesterday. We updated her on what has been happening. When we were ready to leave, she cried. She apologized if she was upsetting us but I told her it always feels good to know other people love Dad too.  He has a great team of doctors that have taken years to gather together.

Again, my point is just this. While I talk about this “stuff” quite frequently, it is still hard to face when it isn’t just concepts we are talking about, but someone I love dearly. It renews my passion again to help people think about these concepts before they are in the middle of crisis. It’s hard enough to do with preparation! I’m starting the process of figuring out my next career move but I know it is going to have something to do with helping people on this journey.