Hospice and Hospitalization

I’m having the sort of week where a) my dad is still on hospice, still getting weaker, still declining, and yet still cracking jokes (when he isn’t sleeping), and b) Jack was hospitalized in a neuropsychiatric hospital. Either one of these things is basically kind of overwhelming. Put them together and it’s like, “Buckle up, missy.”

I’ll be really frank. I’m living on carbs and prayers right now. My brain isn’t working terrifically well. By 7 pm every night, I feel like I would rather die than clean up the kitchen or start a load of laundry. The fatigue is real.

But, at a deep, cellular level I’m also strangely calm and comforted. There is no sense of awful panic. I’m not anxious about the future. I’m glad my dad is on morphine and isn’t in the constant pain that he was before, and I’m happy that Jack is getting the care that he needs to reboot his meds and extinguish (hopefully) his uncontrollable behaviors.

It feels a little like when Truman was a newborn in the hospital for a month. Typical Me would have been a hot mess over that situation. But I felt during that time as though God was holding me in the palms of his hands. I just felt peaceful.

Most people (including Me, Before the Last Thirteen Years with Jacky) would view psychiatric care for their young teen as a worst case scenario. A disaster. A failure. But after the year we’ve had, it doesn’t seem so crazy. It’s practically a natural progression in the order of things with a nonverbal son with autism and severe developmental disabilities. It’s like, “Oh hey, this is just the kind of thing we do. It’s all fine.”

Several people have asked me if Jack’s hospitalization is permanent, so allow me to clarify. His stay in the unit is temporary. It’s a controlled, safe environment which allows his team to made medication changes and implement a structured behavior plan. Based on how it has gone the first two days, I kind of wish we could replicate this perfect habitat for Jack elsewhere: people who get him, people who aren’t afraid of him, people who know exactly how to change his behavior and manage his needs, no outside world distractions, all the meds right there with refills aplenty … It’s basically perfect and I want a mini version of it for Jack to live in every day.

I spent 30 minutes on a conference call with Jack’s school this afternoon wherein they detailed the violence and destruction, as well as the accommodations they have tried with Jack. I spent 20 minutes on the phone with our support coordinator discussing the conference call. I drove an hour to the hospital to deliver slippers and Reese’s cups to Jacky. And I went to Henry’s basketball game.

I can’t see Jack, not because they are forbidding me, but because if he saw me, Jack would immediately try to leave the hospital and head for the parking lot. It’s why I have never been able to visit his classroom or attend one of his class parties. He sees me and thinks, “Okeydoke, we’re done here.” We don’t want to set off more behaviors by appearing and then leaving without him.

So I dropped off his shoes and treats and then left. I talked with the hospital like seven times today. They are amazing at everything, but especially at keeping in touch with me.

And then I came home and ate carbs.


  5 comments for “Hospice and Hospitalization

  1. Barb
    December 8, 2017 at 9:57 pm

    You have been on my mind every single day. I can’t imagine the stress and the fatigue. I’m so grateful that you are feeling buoyed up. I would love to be helpful in anyway during this time. I would be honored to run errands or grab groceries or deliver treats to Jack, whatever you need.

  2. Julie M
    December 8, 2017 at 11:35 pm

    My similar story, in case it helps to hear from others who are in the same boat: The other day, as I assessed my current set of Everest-esque challenges, I wondered, “Why aren’t I flat on the floor, or face-down in bed? How can I possibly be upright? I may not be functioning *well,* but at least I can formulate complete sentences when by all rights I shouldn’t be able to.” And then the Book of Mormon passage I’d read with the kids the night before came to mind—my burdens were being made light. Objectively speaking my burdens are NOT light, and sometimes I grumble at them. But they are not crushing me, even though they ought to be. Somehow, they are being made light. I’m glad you’re upright, too. I love hearing from you.

  3. Blue
    December 8, 2017 at 11:52 pm

    I’m flying right now but when I get home I can come fold laundry or wash dishes or clean floors or run errands for you. Or whatever. ?

  4. molly
    December 9, 2017 at 9:07 pm

    and you ate still lifting others! thank you!

  5. Jen
    December 11, 2017 at 12:05 pm

    Just wanted to say how much I love you! You’ve been on my mind so much. Prayers are said and thoughts are sent and I hope you can feel others supporting and sustaining you from far away. I’m right here for you. Always.

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