Help for Healing

Bitter & Sweet, living daily with grief


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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.


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I WANNA SCREAM!!

Sigh.

Heavy sigh.

Another heavy sigh.

My poor dad.  Our medical system stinks and he suffers for it. Being on palliative care is supposed to make his life more comfortable. In order for that to happen, you must have a palliative doctor, or one that at least fully understands what it means. I have literally spent weeks trying to find him one. Guess why I couldn’t find one? Because there aren’t any.

Geriatrics continues to be an under-served field of profession. People don’t come out of school wanted to work in geriatrics. Palliative isn’t exactly the same thing, but you can see why they are closely related. In all of western New York, there isn’t a palliative doctor unless you are admitted to Hospice.

Having nothing to lose, I contacted Hospice. After phone interviews with me and my dad, I get the call back. No go. He isn’t qualified. His Parkinson’s has to be much further along. It’s a horrific disease that unfortunately waits a really, really long time before it kills  you. It just makes you suffer, sometimes for decades, with no hope of getting better. It just gets worse and slowly robs you of any control whatsoever. I listened to the nurse tell me what late Parkinson’s will look like down the road. It sickened me. I cried for a long time after I hung up.

He has had a backache and needs a pain pill. How simple is that? I’ve been running in a Catch-22 circle for four business days, hitting my head on the wall. Can’t get a prescription without making an appointment. I know that is SUPPOSED to be about practicing good medicine. My cynical (but unfortunately realistic) self knows it is more about getting more money from the office visit. What do they need to see? He’s an 86-year-old man with Parkinson’s who is on palliative care. He is supposed to be kept comfortable. Give the man a damn script. I can’t get him into a good doctor for another three weeks. So his three days of pain may turn into three weeks. Of course we can see another doctor in one week, but neither Dad or I care for him. He definitely does not have a palliative medical mind. He either goes to a doctor he doesn’t want (and still waits another week) or waits three weeks.

What pushed me over the edge was the Parkinson’s doctor. She could have prescribed something, at least to get him through a couple of weeks until he sees his primary. The answer came back, “I don’t treat backs, just Parkinson’s. He needs to see his primary.” I told the nurse about the week I have had. Can someone out there please be humane and give an old man some relief?

She said it’s not about being humane but there is all this controversy about pain meds now. Blah Blah. I know, but an 86-year-old man with a degenerative disease is not the person they need to worry about. It’s all so ridiculous.

All of this time, energy and emotional turmoil for me, and all the physical and emotional turmoil for him over a pain pill. There is another even more ridiculous saga over getting him physical therapy. I don’t even have the motivation to write about that too.

I’m an Aging Care Manager. I am supposed to help people “navigate our complicated medical system.” I can’t even help my dad. So frustrated.

Feel free to share any stories you might have. And if I am missing some loophole, for God’s sake please tell me ASAP.