I Give Up. Thank God!

Today I found out my dad is getting seriously minor league medical care. He has two main doctors: his general practitioner, and his cardiologist. Two weeks ago he got out of the rehabilitation facility in which he spent six weeks following his stroke. He also had a doctor overseeing him there.

So that’s three doctors.

Today I learned that my dad’s long-time g.p. has no idea what medicines my dad is currently taking (and limited interest in the matter, which made me want to chew off his head). Each morning he takes over a dozen different pills, and each evening three others. This is the medicinal regime prescribed to him by his doctor in the rehab center (who in six weeks examined him once, for maybe two minutes, right before he was released).

Turns out the g.p. hasn’t conferred about my dad with the rehab doctor—and neither of them has discussed my dad’s stroke with his cardiologist. His cardiologist didn’t even know he’d had a stroke, or had spent six weeks recovering from it in the rehab center, where no one had thought to tell him.

It’s unbelievable. My dad would get better coordinated medical care from a group of hillbilly glue sniffers.

The crazy thing is, he’s gotten a lot better. When first out of the rehab center, he was in pretty bad shape: he got dizzy easily; he slept all the time; he sort of drifted in and out of coherence. Cat and I came out here because we thought he was dying. But right now you couldn’t beat the guy to death with a frying pan. In the five days we’ve been here, he’s practically turned into Johnny Weissmuller. Day before yesterday, he took one nap. Yesterday, he was up all day. He’s sharp as a tack: he’s crackin’ jokes, singing, telling stories. It’s like hanging out with a nightclub act. In the worst club ever—but still.

He really does think he’s Joe Swinger. He thinks he and Frank Sinatra were separated at birth.

Of course, yesterday he also, by way of warming up a bowl of stew for himself, put a cereal bowl filled with stew atop a stove burner, and turned the heat up to high. And if he tried to drive his car (as he constantly wants to), he’d wipe out half the houses in this neighborhood. And if he stands up too quickly, he still gets pretty dizzy.

But who doesn’t get dizzy if they stand up too quickly? It’s ridiculous. By the time we leave next week, he’s gonna be climbing the ranks of the WWGW (World Wide Geriatric Wrestling).

So here’s the thing: Cat and I are feeling like maybe we shouldn’t be leaving so soon. It kills me that he’s getting such messed-up medical care. And I don’t really know how bad it is; I’ll know more about that today, after we see his cardiologist. But there’s a big part of me that just wants to stay, and get his healing done right. Do the exercises with him he he’s supposed to be doing. Make sure his meds are all dialed in. Get his diet right. Get this thing done, you know? Heal him up.

He’s still my father. Yes, with him Cat and I only experience three emotions: Fear (when he launches into yet another rage, and we fear he’s finally going to die of a heart attack), anger (when he’s being unbelievably rude and obnoxious) and boredom (when he’s fifteen minutes into yet another of his eeeeeeeeeeeendlesssssssssssss stories that are so boring you curse the day God gave you ears). So it’s not like he’s pleasant to hang out with. (As I write this, for instance, he just got done giving me his lecture about what a “crazy, abnormal, stubborn pain in the ass” I was when I was a kid.) But he’s still my dad. Growing up, I still (sort of) idolized him. I still marveled at his physicality. He’s still the funniest, most articulate person I’ve ever known.

Anyway, I wasn’t expecting this. I wasn’t expecting to not feel sure about leaving. I thought after a week I’d bolt right out of here. (Right now he’s in the kitchen, moaning and groaning—and I mean loudly—as he shuffles around getting himself a cup of coffee. You’d think he was in there strangling to death and butchering a cow, for all the suffering sounds he’s making.)

Do you know what? To me, this is what praying is for. People say they pray for guidance all the time, about all sorts of things. But I don’t. The right thing to do or think is never much of a mystery. But every once in a while, I come to a very dense dynamic that feels evenly split, and I really don’t know what to do. That’s when I sit down, close my eyes, and seek wisdom from God.

I realized last night that it was time for me to do that. It’ll take a couple of minutes I haven’t yet had; I’ll do it sometime this morning after we’re back from his cardiologist. I’ll get alone somewhere, and bring the situation to God.

On the one hand, screw him: let him die.

On the other hand … well, he’s my father.

The thing is, I can’t help him. I can’t really set things up for him here. He won’t move out of this house. He might pay to bring people in here after we’re gone to help him take his meds and clean the house and all that, but he’ll be so obnoxious to them he’ll be lucky if after two visits they don’t start slipping him arsenic and rat poison. What he wants is for Catherine and I to live here with him. But I don’t need God to tell me that’s not going to happen. We couldn’t afford to do that if we wanted to. He can afford to move out to San Diego to be near us—but he won’t.

Anyway, prayers ‘a comin. I’m pretty much always grateful to have with God the very clear relationship I do. But never more so than on those rare, intense occasions, such as the one I’m in now, when finally I must come before him, lay down my concerns, and wait for him to deliver unto my meager little mind and soul the kind of answer that only he can provide.

It’s so weird—and wonderful!—to have one father who’s such a pain in the ass, and another who virtually never fails me.

About John Shore

John Shore (who, fwiw, is straight) is the author of UNFAIR: Christians and the LGBT Question, and three other great books. He is founder of Unfundamentalist Christians (on Facebook here), and executive editor of the Unfundamentalist Christians group blog.  (In total John's two blogs receive some 250,000 views per month.) John is also co-founder of The NALT Christians Project, which was written about by TIME,  The Washington Post, and others. His website is JohnShore.com. You're invited to like John's Facebook page. Don't forget to sign up for his mucho-awesome newsletter.

  • Mindy

    I am amazed at your clarity of mind. I’d be banging my head against the wall, and there are you are, wanting to help this man who hurt you so very badly. Wow. I’m in awe.

  • http://www.youtube.com/epistomolus Dennis Dawson

    Without grinding through all of the details, my son has chronic problems that requires the orchestrated attention of several specialists. At first, we assumed they would communicate with each other, or at least read letters and email. Now, my wife is essentially the primary care physician for my son, coordinating the different doctors, recounting conversations verbally, suggesting tests (for God’s sake) based on her research on the Internet. She brings medical papers for the doctors to read so that they can get up to date on the current treatment.

    A good example is that we were at Lucille Packard Center (Stanford Children’s Hospital) discussing a procedure with a surgeon. He recommended an outdated procedure that had a long, painful recovery associated with it. My wife had read about a new procedure that is much less invasive. We questioned the doctor, he was adamant to the point that he said he couldn’t be responsible for what happens if we didn’t follow his advice, and they sent Child Protective Services to look into whether we were caring for him responsibly. When we took him to UCSF Medical Center, the surgeon was surprised that the other guy had even considered the old procedure, saying he had used the new method that morning on a frail four-year-old girl. We did the procedure there, of course, with an outstanding outcome and no recurrence after over a year.

    Bottom line, we’re all going to have to pay more attention and manage healthcare for ourselves and our loved ones until they get this mess of a system straightened out.

    ~D

  • http://leap-of-fate.com/ Christy

    =)

    In my former life I was an advanced practice nurse. I feel your inept medical coordination pain.

    Take all of his medications with you to the cardiologist. Call the GP when you get home from the cardiologist and talk to the nurse. Tell her what his updated list of pills are so his chart will be “accurate.” Consider coordinating for a home health nurse to come every so often (once a week?) to set up his pills and keep him on track with his doctors.

    And keep being you. We’re learning so much from you while you are going through this and while we try to be a part of the ocean that helps keep you afloat.

    Blessings, John.

    Christy

    • kim

      Great idea!

  • Melissa Chamberlin

    :o) I had a feeling this would happen. Your dad will outlive you. LOL My dad has a hole in his lung and still smokes. He is so short of breath, but he tells everyone that it is because of a bum knee that he cannot walk very far. So everyone goes out of their way to get him around while he lights up another.

    John, I cannot tell you how much I am learning from this. Ummm, sort of like, “your pain is my gain.”
    :D You know what your answer is going to be from that prayer…but pray anyway. I will pray for you as well. He really does need you. Have you considered hiring a healthcare advocate for him?

  • grandmaloves

    John and Cat, thank you for your honesty and willingness to keep us posted on what is occuring in your life with your dad. As we all continue to pray for you all; it is wonderful that you do not keep us hanging out here wondering what is occuring.

    First, as you know I am a avid reader; learner; listener in and about the Body of Christ; and whom Christ is. I want to tell you that you naturally have interpreted the Bible correctly with decision making. God wants us to move; just do something; not wait for some fleece to tell us what to do; or flipping Bible verses. He wants us to trust He has the big stuff (like the Universe) taken care of; in the stuff of our life we have freedom to choose.

    Second, because of this freedom know if you stay or if you go and find some means of care for your dad; you are honoring your dad either way.

    Third, just breathe…. logic, emotions, thoughts, heart become a wirlwind in us when life places in such situations. I have been through this twice with my grandmother and then my dad. So, just breathe… you and Cat (without even meeting you) are amazing human beings. One of the best statements ever said to me by my father (and we had issues too) was: JoAnn, I would trust any decision you make because I have never seen anyone weigh issues out like you do in life. John, you are the same way… there is no “wrong” decision because you are making a decision with deep thought and from the heart.

    Fourth, I again bless you…. as Christians we fail to bless one another enough in this world; it should be a common thing; but, it is not. Blessings upon one another allows the “good things” of God to come forth.

    I hope clarity comes soon as to what is best for your dad, you and Cat. You honor your father with your life.

    JO

  • Melissa Chamberlin

    On the healthcare front. Be gentle with the doctors. It is not only their fault. They are running at a neck break speed to keep up with a schedule that is handed down to them from administrators. The great ones learn how to be good anyway. Good time managers do not always make good doctors, and visa versa. Try to set up an accountablitly paper trail with them where they send you all of the records that they create on your dad. You do have to manage these yourself. It is not their job. It really isn’t. It is our job to give them the personal information that they need to treat us. I am amazed, but I still have to tell every doctor that I do not have a stomach each time they have to give me a med. They never remember…Never. Most of them don’t think that they have to take that into consideration. I know, crazy…but true. You will save yourself a hell of a lot of frustration if you lower your expectations and roll.

  • Susan in NY

    I am thinking of you, John.

    In a recent elderly health issue I was involved with, Medicare was extremely helpful in ways large and small. They arranged for a nurse-practitioner to organize the MDs, and they helped in getting home help. Also, don’t forget Meals on Wheels.

    In my case, the crabby elderly patient shockingly warmed up to the tough Jamaican aides and now they are fast friends. FWIW.

  • Mary

    “He’s still the funniest, most articulate person I’ve ever known.”

    Well, now I know where you get this. So for that you should be truly grateful.

    Sounds to me as though your Dad may have been over or under medicated.

    This kind of non-coordination is common. My GP is good about specialist coordination But not all are. So, don’t think all Appalachian doctors are bad. But mine is from the Chicago suburbs originally. :-)

    I could tell you what I’d do, but you’ve already considered it. So, I’m just gonna’ pray for you some more.

    -m

  • Lynne

    This kind of crappy “We can’t help being uncoordinated and oblivious while passing out extremely harmful chemicals and treatments” is just how modern western USA medicine “works” today. My family enfured this for over a year and never were able to relax efforts to get these “professionals” to give at least as much attention to what they’re doing as the kid at Dominos Pizza does. Can’t tell you how many nurses told us that elderly and severely injured people who have families who question and make waves when needed actually survive and do better than those who don’t. So good for you for helping out your dad! He needs you like he doesn’t even know. We were told my grandmother wouldn’t last a month but we pushed for care that paid attention she lived happily for another 14 years. Hang in there!

  • http://ricbooth.wordpress.com/ Ric

    Okay, this made me laugh (with a little eye tearing):

    What he wants is for Catherine and I to live here with him. But I don’t need God to tell me that’s not going to happen.

    Okay, I’m back. Well, I know what you mean. Frustrating. Went through this with my father. The helpful hands that were hired to come in lasted 6 weeks at a time. Maximum. He could not pay them enough to put up with him. Some volunteers for the church came in to help out. They lasted about 6 months. A volunteer group in the county jumped in for about 2 months and then the volunteer group director called me to chew me out, which was so … reminiscent of all things Dad.

    I could not help my father. He would not let me, nor anyone else, help him. It was his way or the highway. Everyone, including the health care professionals, were totally cool with the highway.

    I persisted in advising him of his best options. He persisted in being the man he’d always been.

    I’ll keep praying for your revelation.

  • lilypad1213

    Love your blog, your honesty, and your openness. Oh, and your humor. Thanks.

  • http://myfanwe.wordpress.com Meg

    “Good time managers do not always make good doctors, and visa versa.”

    My doctor is almost always running late, but…

    he listens, he takes the time to check things out, and despite being a sadist with a liquid nitrogen fetish, he’s the best doctor I’ve ever had and I hope he will be caring for me for a long time!

  • Don Rappe

    Don’t get me started about the American medical “system”. There is no system.

  • Tim

    I guess its no secret that we are our own best healthcare advocates. If we become diminished in capacity…if we don’t have family to look out for us…we are pretty much at the mercy of that proverbial Dominoes Pizza Delivery Kid. Whenever my mom goes to the emergency room, one of us (her kids) has to be there to make sure they don’t kill her with bumbling bureaucracy. We have all of her medical records, files and DNR docs on a flash drive that she keeps (I think) on her car keys. But even still, without a human at her side to make sure the nurses don’t administer a drug that will kill her, that wealth of medical information specific to her case, is about as likely to be plugged into a USB terminal than the key to her car.

    No matter what sort of “system” we have for medical care, PEOPLE are either the key to its success, or the lowest common denominator of its failure. I think the real problem is that a whole lot of people are just there for a paycheck and regardless of how cantankerous or sweet the patient, they die if nobody else does their work as though they were doing it for their own child, spouse, or parent.

    Good on you, John, for being there. Your father is fortunate to have you as an advocate. In turn, we are fortunate to have Christ as ours.

  • tavdy79

    I am NEVER going to complain about the NHS ever again (well, except for the local NHS mental health trust, which seems to think that waiting almost three years to assess and treat someone threatening suicide is a good idea).

  • Allen

    John, you are so right about prayer. Real needs, and real thanksgiving, that’s when we need it most. I like to think that the prayers in between are to keep us in shape, as it were, or “a Test Of The Emergency Broadcast System.” God is there for all of them, which is the amazing part.

    Hang in there, and remember that if you (and Cat) are totally spent it doesn’t do your Dad any good; take care of yourselves so you have the oomph to do what you can for him. As you know, you’ve got a good number of folks praying along with you.

  • Troy

    First, something simplistic – it should be “Catherine and ME to live “.

    Second, you don’t have to be Mr. Nice Guy all the time. If your Dad wants to be a jerk, call him on it. You’re an adult now, and deserve an adult’s respect. You’re trying to be helpful, and even if you don’t get gratitude(most people don’t), you deserve respect. If you don’t, your wife does. Don’t take crap – Life is too short, you deserve better.

    You Can set up some things there. Do like Christy said and talk to his doctors. Treat them with respect, but Be Firm. Tell them what You need so your Dad gets what He needs. Lots of people take what comes and then don’t understand why they get screwed. At least when you stand up for yourself and your family you can say you tried everything you could think of. God will do some things; You have to do others. And most people can do more than they think.

    It’s easy to confront obstacles when the outcome doesn’t matter; it’s harder when you have a stake in the outcome, but it’s even more important that you try. When I confronted my mother about some of her selfishness, we were able to mend things a bit. We’re better friends now and I go over to her house and help her with her life. Play the “Why” game; “why are you angry, Dad?” “Why does that bother you so much when no one else cares?” Some people are angry because they’re afraid. Some are insecure. Finding out why can defuse that.

    Advice from others is easy. We can spout crap all day, but you have to decide what is right for your situation. Some God action is very nice, but sometimes the answer is “no”, and you have to stand up for yourself. You handle the practical side the best you can, and let God handle the spirit, and do right by yourself At The Same Time that you do right by your Dad. You need to be a priority also; your Dad’s had years of chances. That doesn’t mean write him off. But don’t write yourself off either.

  • Joe

    Been there.. Done that. Got the ashes. Spread them in special spots.

    I feel for you John. It’s so hard when your parents are making what we consider to be bad decisions in their later years. My wife and I have two ‘T” shirts out of 4. The others either died earlier or made better decisions.

  • RobMc

    John,

    I wandered in here for the writing. Stayed for the family sacrifices.

    I’ve gained some welcomed insights. You’ve gained my prayers for peace and understanding.

    Holding you up, man.

    Rob


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