Winding Down: The Hospital

DSC_4417I want to write about the time I spent with my grandmother in the hospital last week, but I don’t know how to do it.  I start and restart and am at a loss. Because you know what it was like? I’ll tell you: it was depressing.  It was simply not right.

When you see someone important to you, particularly a person who took such good care of you when you were growing up – a person who made it her business to generously take care of everyone in her family, neighborhood, and even city through her volunteer work – being cared for so poorly, it’s hard to know what to say.  She’s not in what would be considered a bad hospital, by most standards.  I don’t think that anything has happened to her that would be all that unique to the hospital setting in general these days.  And yet I came away knowing that the care she has been receiving is substandard and disheartening.

Think for a moment about being legally blind.  Imagine how it must feel to have your food tray dropped off near your bed (but out of reach) without a single word, so that you don’t even know it’s arrived and by the time you discover it the entire meal (already rather gross) is stone cold? Or, in the best case scenario, the tray is placed carefully in front of you with someone mentioning what’s on it before leaving, but you couldn’t begin to know where on the tray each item is located or how to open the containers.  Imagine now that you did manage to pull the top off the entree and can smell turkey, mashed potatoes, and gravy, and it smells okay to you – but your bed isn’t propped up enough to really be able to eat safely.  And how are you going to cut the turkey, if you can even find it with your fork?  Do you have a knife somewhere?  Just think, as a blind woman, how hard you’d have to work to eat that food that you don’t even like, when you are feeling so ill.  And yet over and over, the hospital staff drop it off and leave the room, expecting you to do just that.

Now imagine that you are in the hospital because you hurt your leg very badly and, being on blood thinner, you experienced horrible bleeding and are at risk of infection.  It’s healing slowly and when you were in rehab you passed out each time you exerted yourself so you’ve been sent back to the hospital.  Now they’re watching your heart rate and your blood pressure, trying to stabilize both.  You know they’ve taken you off the blood thinner while your leg heals and you are supposed to be up and moving around for the sake of your circulation.  Doctor’s orders.

But no one bothers to help you out of bed.  For days.  “We’re short-staffed,” they say, when they stop long enough to answer honestly.  Most of the time, they promise to go get another nurse to help and never come back.  Your doctor requests a specific chair but the nurses insist they’re all being used.  They tell you that “the minute” one is available, it’s all yours.  The next day, still no chair.  But your granddaughter spots one out in the hallway on her way in and asks a nurse.  And then another and another until she has requested it from every nurse on the floor.  It takes four hours before it finds its way into your room at five in the evening, but no one stops to help you out of bed and into that chair that day.

The next day, when your granddaughter arrives, the chair she fought so hard for is out in the hallway, abandoned until she kicks up enough of a fuss to get it moved back in again. Days later, it requires the arrival of the Physical Therapist to take the time to move you into the chair.  You’re so grateful to her that you tear up and beg her to come back tomorrow – telling her that you feel human for the first time all week – and yet you are informed that since you’re going to go back to rehab from the hospital eventually, you don’t qualify for more than this one PT visit.

And, wouldn’t you know it, that night you begin to have small strokes.  Would they have started at some point anyway?  Maybe.  Can we say they were exacerbated by lying in a bed for a week without movement or PT exercises when not on blood thinner?  I’d say so.

The trouble is, these days an advocate is required in the hospital.  Someone to push for information, to request that the doctors talk to each other, explain things to the patient, and to get that damn chair into the room and get the patient into it.  To notice that her mouth and lips are bone dry and make sure she gets water and chapstick often, to trim her long fingernails, and to puff up her hair a bit; after all, it hasn’t been washed in ages.  To tell the doctor that she’s choking on thin liquids and needs a swallow study immediately – because no one watches her eat or drink, even though they think she had a stroke the night before.  To find the button she can’t see that props up her bed, tell her that her tea is at 1 o’clock and the mashed potatoes are at 7 o’clock, and to cut her turkey and hold the fork out for her to feed herself.  Who has time for such things?  Not the nursing staff at this hospital, that’s for sure.

But when the advocating granddaughter sees that her grandfather is looking exhausted and it’s getting close to dinner time, the patient is left alone until morning.  The nights are long and sleep constantly disrupted, the care is worse during the night, and there is no way for them to get back until lunchtime the next day, at the rate the elderly man moves. And so you survive the experience somehow, lying in your bed, minute by minute, until someone arrives to keep you company and advocate for you again.

In the end, one is left with the distinct feeling that while medication is adjusted and monitors are watched, the patient loses ground day by day in terms of strength and morale, which leads to further complications and longer hospital stays.

The fact that we, as a nation, are fighting so hard for everyone to have the privilege of this experience is just too damn depressing for me to think about tonight.


9 responses to “Winding Down: The Hospital

  1. Makes me so sad. Simple acts of compassion shouldn’t be so hard to come by. *hugs* and all my good thoughts with your family far and near.

  2. Jordan, I’m sorry for this situation, for you and your grandmother. They’re all like that, these hospitals. You have to watch every step, every move, every dose. It’s just a business to so many of the people involved, or the patient’s just…a body that breathes…until it stops breathing. Young and old, we’ve had to run interference of all kinds in hospitals, to insist on pain meds, on appropriate food, appropriate care, stopping those ridiculous interruptions, ensuring that the doctor’s orders are, in fact, followed…and I’m always amazed at how the alarms on those monitors can go off…and beep…and beep…and beep…and no one shows up to check, just assuming that it’s not “real.” It all sucks. It’s all depressing. We should be able and expected to heal and die at home, as much as possible, away from people who couldn’t care less…and can’t even bring themselves to pretend that they care more.

    Our latest experience also involved a brutal and ugly family disagreement over where my grandmother should be. I’m glad that you don’t seem to have that ladled on top of everything else. Another reason for us all to be sure we have living wills…and people who can be sure they’re followed.

  3. Mari Viertel

    I must say that when reading this I feel ashamed for those of my profession who so obviously didn’t do their jobs properly.
    I studied nursing in another country and that I have never worked in the US, but I was always taught and always worked with the philosophy that nurses are their patients’ advocates.

  4. Oh, God, Jordan, this makes me sad and angry. For all the time we’ve spent in the hospital with Nik, I always knew that he got the necessary attention and caring when I wasn’t glued by his side. But it’s easy to do when the patient is a small, defenseless baby, I know.

    Is there a patient advocate at the hospital that you could send a copy of this essay? It might get their attention. Maybe too late to change what happened for your grandmother but not too late to help someone else’s.

  5. Beautiful post. Should be submitted to a newspaper. Or to Newsweek for the My Turn page. It’s so timely right now.

    Aside from all that, I’m so sorry your family is experiencing this in this way. But so grateful that you are able to do what you can for your Grandma and that you had the chance to be there when she needed you most.

    Sending hugs.

  6. I agree with Kristen. You should definitely submit it. It’s beautifully written, and hard to read. I can barely imagine how it felt to write.

    Your grandmother is so lucky to have you advocating for her.

    XO R

  7. Thank God you knew what to do and how to do it in that hospital, Jordan! Not everyone would be able to make things happen the way you managed to, even in the limited time you had. Your grandmother is a treasure to you, I know, but you must SO be a treasure to her. What a gift, to receive a granddaughter like you.

  8. Sigh. I hate hearing about these things – knowing that your grandmother’s story is all too common and that some have it even worse.

    Sigh sigh sigh

    You are a wonderful granddaughter.

  9. Oh, Jordan. I’m so sorry for your family. The helplessness. Even when Reilly was in critical condition, we got the same kind of service. There was never any announcement to get ourselves together before the transport team arrived and swept him off. I was force, on more than one occasion to completely stop the team and say “Look at me. I am his mother. Look at this screaming infant in my arms. And, now, look at your patient. Look at him. He is a five-year-old-boy with a massive brain tumor. His head HURTS. SLOW DOWN. Don’t crash his bed over the many bumps along the way. Don’t allow his bed to crash into the walls. Treat him as if he was your child.”

    Our doctor was amazing, but we rarely saw him. He could have used two more doctors on his team.

    And, on a Saturday morning, when the doctor had a rare day off, J took Reilly down to play at the train table after yet another painful, sleepless night. They just needed to get out of the room. Baby Finn and I were sleeping in one of those dreadful fold-out chairs. Finn was nursing. A resident came in, felt the back of FINN’s head, and asked if we were ready to be discharged. Finn was not the patient. This idiot hadn’t even consulted the chart before he barged into the room. And Reilly was in no way eady to go home. He had received no PT. He couldn’t walk. He threw up everything he ate because he was in so much pain.

    Sorry for taking over your comments. But your beautifully written post took me back to that time and place. And I needed to tell you – you are so right. The system isn’t working. It’s just not working.

    Your family is in my thoughts. I can’t imagine how difficult this is.


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