Denise Day Spencer

December 26, 2009

“Terminal”ly homeless

Filed under: Home Front — denisedayspencer @ 9:41 pm

As I write this, Michael has been a hospital inpatient for five days. Absolutely everybody — from the chief neurosurgeon to the young lady who brings the breakfast trays — has been wonderful to us. So I have no real complaints. But I do have a thing I’d like to mention to any hospital administrators who just happen to be fans of my writing. Think of it as constructive criticism, OK? I’m only trying to be helpful.

We’ve so far spent four nights in the Markey Cancer Center. Markey knows how to be family-friendly. Private rooms. Loveseats and recliner-to-cot chairs in the rooms. A kitchen with a refrigerator where folks can store food. A washer/dryer combo. A set of restrooms and a shower room. A spacious family visiting room complete with daybeds so people can camp out  overnight if need be. Yes, Markey has the right idea.

But neurosurgical intensive care? Not so much. Now I realize neurosurg. ICU is not primarily concerned with family members’ well being. Neurosurg. ICU is primarily concerned with keeping the patient alive so the family members can still be family members, and that certainly works for me. The nurses did a fantastic job of caring for Michael. But somewhere up the administrative ladder there seems to be a slight deficit of common sense in the policies and procedures department.

I spent one night in the neurosurgical ICU. By dawn I had decided that if I had to stay there one more night I would sit down in the middle of the hall and cry. But my real problems were only beginning. You see, it’s difficult to sleep the night before your spouse is going under the knife for major surgery. And it’s even more difficult to sleep sitting upright at his bedside in a little chair all night with lights on and buzzers going off, just a couple of yards from a very busy nurses’ station. So by 7:00 a.m. after a night in ICU I was very sleep deprived. Not only did I crave sleep; I particularly craved being able to sleep in a horizontal position. Here’s where the policies and procedures come in.

It seems the neurosurgical ICU is closed to visitors from 7:00-8:30 a.m. and 7:00-8:30 p.m. so doctors can make rounds, nurses can give shift reports, etc. So you’d think the exhausted family members who’ve been sitting upright in a little chair all night could seek refuge in the ICU waiting room, right? Wrong. Because the waiting room is also closed at the same time so it can be tidied up and cleaned. Excuse me? At the same time? Whose bright idea was that?

The good news is that it really doesn’t matter, because the ICU waiting room was obviously designed by someone who had never spent even one night in the ICU. There are only two loveseats on which anyone can stretch out part-way. The rest of the seating is all chairs with wooden arms, so two or three chairs can’t even be put together to improvise a cot. “If I’d brought a sleeping bag I could at least lie on the floor,” I thought — until I read the waiting room rules that included, “Please do not sleep on the floor of the waiting room.” And the chairs might as well have wooden arms, because another rule was, “For safety reasons, do not rearrange any of the furniture in the waiting room.”

To make matters even more challenging, I was loaded down with stuff. Of course there were no lockers in the ICU waiting room, only cubicles. But a nurse had already advised me to not leave anything anywhere in the waiting area or around Michael’s bed. So there I stood with my laptop in its bag, a tote bag full of belongings such as clean underwear and snack food, a small backpack of books, the pillow I’d brought from home and the blanket I’d carried with me out of the ICU back when I actually thought I might be able to find a place to position myself horizontally. Silly me.

I know, I know. Most people would simply shrug and say it was time to go to the cafeteria for a cup of coffee or some breakfast. But I really didn’t relish the thought of bumping into people this way and that with all of the aforementioned stuff. Anyway, I wanted rest more than food. And I didn’t want coffee. I didn’t want to wake up more; I wanted to sleep!

Somewhere in my semi-dazed state I recalled the movie The Terminal. Like Tom Hanks’ character, I had suddenly become homeless. I pulled my laptop bag strap over my head to hang from one shoulder and hoisted the tote bag strap on the other. With the backpack on my back, the blanket over my arm and the pillow in my hand I was all set. All set and nowhere to go.

Then I remembered Markey. Wonderful Markey. Michael was technically still a Markey patient, wasn’t he? The only reason he’d left there was for surgery, right? Surely the Markey staff wouldn’t mind if I dozed for a delicious hour on one of their soft, comfy daybeds. My head beginning to throb, my eyes burning, I stumbled back to Markey like a lost, starving dog finding its way home. At the doorway to the family room I stopped abruptly. Another sign describing policies and procedures. “Please do not sleep in the family room during the day. All linens must be picked up by 8:00 a.m.” I was too tired to cry. I may have softly moaned; I really can’t remember.

The tote bag and laptop were getting heavier by the minute. Maybe it really would be better to go to the cafeteria. When they found me facedown in my tray aspirating oatmeal, they could admit me to the ICU. At least then I’d have a bed.

Then a dim memory flickered in my mind. Wasn’t there a huge lobby on the first floor of the Markey building? Maybe — just maybe — it had loveseats instead of armchairs. I staggered to the elevator and rode down two floors. I stepped into the lobby and saw…couches! Couches on which a person could even — oh, dare I say it? — stretch out. Pure paradise! But wait. No, there were no signs detailing lobby policies and procedures, but surely it was against the rules — even those unwritten ones — to lie on lobby couches in a horizontal position. It wasn’t that I minded being arrested so much (jail cells do have cots, don’t they?) but I needed to be there for Michael. Besides, he was in no shape to bail me out.

Then I slowly turned my head to the right. All along one enormous window ran a padded windowseat. At that moment my working vocabulary was downsized to one word only: “bed!” I looked cautiously around. It was Christmas Day; there seemed to be no staff anywhere about, but I was still nervous. I chose a spot at one end of the window where I could lie mostly shielded from view by a grand piano. Still, I tried to curl up to make myself as small as possible. I pulled my blankie up over my shoulders. I had laid my ICU family members’ guidebook at my feet so that when the inevitable happened and someone called security, at least the guard would know that I was one of the hospital homeless as opposed to the run-of-the-mill, garden variety homeless. Not that it would make any difference, but still. I just wanted him to know.

As exhausted as I was, I could hardly close my eyes. I started at the sound of every distant voice. My pulse rate quickened as I heard the footsteps of someone entering the lobby…only to cross to the other side and exit. Then all was silence.

Some 45 minutes later I awoke. I remained alone; no security guard towered over me. My bags were stashed right under the piano where I’d hidden them. It was still Christmas Day, and I was as delighted as Ebeneezer Scrooge when he awoke that Christmas morning. The ghosts did it all in one night and the angels watched over me. Feeling remarkably rested, I loaded my belongings on my back and trudged back to the neurosurgery ICU to sit upright in my little chair.

I wish I could say I engaged in civil disobedience that day, that I took a stand for the Terminally homeless in hospitals and airports everywhere. But I can’t. All I can say is that I just needed to sleep.

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17 Comments »

  1. Denise,

    We are praying for you and your family. We are praying specifically for Michael’s health, and for your health, as you go through this difficult time. I would especially pray that you would experience God’s presence at this time, and the comfort that he is with you every step of the way.

    Mike Bell
    Dundas, Ontario, Canada

    Comment by Eclectic Christian - Michael Bell — December 26, 2009 @ 10:30 pm | Reply

  2. And I want to add that Michael is also in my prayers on the other side of the world — Australia. May the mercy of Christ enfold you both

    Comment by Lynne — December 27, 2009 @ 12:22 am | Reply

  3. Bless you and Michael and you whole family. As one who works in a hospital, this raises my awareness even more to the sufferings of the family members as well as the patient.

    God grant you grace through these times.

    Comment by Joe M — December 27, 2009 @ 9:40 am | Reply

  4. Denise,
    You don’t know me, but I’ve followed IMonk for a long time and have been praying for you and Michael throughout this ordeal. I am sorry that I didn’t pray for sleep. I should have known better, having slept on waiting room loveseats and floors for several days when my father-in-law was in ICU.
    May our gracious Lord grant ALL your needs today and in the days to come.

    Comment by Kat — December 27, 2009 @ 1:34 pm | Reply

  5. Praying for you here in northern Canada. Lit a prayer candle for your whole family.

    Comment by Hope — December 28, 2009 @ 2:38 pm | Reply

  6. Thinking about and praying for you and iMonk in southeast Virginia…
    -Josh T. and family

    Comment by Josh T. — December 29, 2009 @ 11:33 am | Reply

  7. I’ve followed IMonk’s blog for a long time, and I pray for him and for you during this grim time. I hope by now (five days after the latest entry) both of you are in more comforatble circumstances. You’ll continue to be in my prayers.

    Denise, I’ve found sometimes that looking pitiful helps a lot. Maybe if you could approach the nurses’ station, explain the situation, and ask if there’s any place you’d be allowed to lie down, they’d be sympathetic. Especially if you could manage to look as unhappy as you feel.

    Heather

    Comment by H. Lee — December 31, 2009 @ 6:06 pm | Reply

  8. Denise, I really understand what you went through in this regard. When Jonny went to St. Edward Mercy in Ft. Smith, there was also a question of sleeping arrangements for “the mom” because there was a recliner or cot option in the room with him but Rachel needed that. The staff there was wonderful trying to make our situation as comfortable as possible when we were in the room but at 9:30, “the mom” had to make other arrangements. Jonny and Rachel live 35 miles from the hospital and I wasn’t about to leave my son at such a precarious time, even for a minute. When 9:30 arrived, I hightailed it down to the ICU waiting room, where there were around 20 couches available for visitors. At that time, they rolled in a cart with pillows, pillowcases, blankets and sheets for anyone to use for the night. The lights and TV in the waiting room went off at 10:00 with an announcement that visiting hours were over so the talkers would leave. You had to get there early, though, some nights people slept on the floor after all the couches were taken. What a blessing to have somewhere to lay my head every night…10 nights I laid there thanking God for this thoughtful hospital that made a resting place for all these weary people. I wish this had also been your experience. You had enough to deal with…where to get some physical rest should not have been such an issue. Tell Mike we are praying for him and for your family…you are our friends and we have lifted you up daily to the Lord.
    P.S. I almost considered the chapel pews…they looked a little more comfortable.

    Comment by Kathy — January 1, 2010 @ 8:29 am | Reply

  9. Thanks for helping us all walk a little while in your shoes. So many times we pray for grace for the patient, and forget the needs, common and extraordinary, of the ones around the patient.

    Denise, you had quite a Biblical Advent and Christmas, didn’t you? First, “advent within Advent,” then, “No room at the inn.”

    Thanks for sharing; your transparency is sparking sympathetic prayers.

    Comment by chaplain mike — January 2, 2010 @ 12:17 am | Reply

  10. Denise:
    I am a veterinarian and a clinical nutritionist. A few years ago I was in a bicycle accident and suffered severe head trauma. I was dizzy, lost my appetite (145 lbs 5% body fat.yikes!) and had my jaws wired shut for a month. I survived on custards and creme brule. Think easy digestibility and high caloric density. My prayers for you and Michael.
    John Bressett MS, DVM

    Comment by John Bressett — January 2, 2010 @ 7:10 am | Reply

  11. Denise, we were saddened to read about recent events. Many prayers being sent your way from the frozen state of Minnesota. Blessings…

    Comment by Tom and Katy — January 3, 2010 @ 10:21 pm | Reply

  12. I woke in the middle of the night last night thinking of you and I-monk…the words to this song by Steven Curtis Chapman came to mind….know that you’re in my thoughts and prayers…

    I don’t even wanna breathe right now
    All I wanna do is close my eyes
    But I don’t wanna open them again
    Until I’m standing on the other side
    I don’t even wanna be right now
    I don’t wanna think another thought
    And I don’t wanna feel this pain I feel
    And right now, pain is all I’ve got
    Even then I will say again
    You are my God, and I’ll trust You
    And with every breath I take
    And for every day that breaks
    I will trust You
    I will trust You
    And when nothing is making sense
    Even then I will say again
    It feels like it’s all I’ve got, but I know it’s not
    No, I know You’re all I’ve got
    And I will trust You, I’ll trust You
    Trust You, God, I will
    Even when I don’t understand, even then I will say again
    You are my God, and I will trust You
    God, I’m longing for the day to come
    When this cloudy glass I’m looking through
    Is shattered in a million pieces
    And finally I can just see You
    God, You know I believe it’s true
    I know I will see You
    But until the day I do
    I will trust You, trust You
    Trust You, God, I will
    Even when I don’t understand
    God, I trust You
    I will trust You
    I know Your heart is good
    I know Your love is strong
    And I know Your plans for me
    Are much better than my own
    So I will trust You, trust You
    I trust You, God, I do
    Even when I can’t see the end
    And I will trust You
    I will trust You, I will
    Even when I don’t understand
    Even then I will say again

    I will trust You, I will trust You, I will
    I know Your heart is good,
    Your love is strong,
    Your plans for me are better than my own
    Yeah, Your heart is good
    Your love is strong
    Your plans for me are better than my own
    And I trust You
    You are my God
    And I will trust You

    Comment by Diane — January 4, 2010 @ 3:47 pm | Reply

  13. I don’t know how, but someone referenced by blog through yours. I always check out where people are finding my blog. My daughter-in-law is a physician at UK. I will pass this information onto her about your ordeal. I have spent some time myself in ICU waiting rooms, etc. with my mother and father-in-law. Family members need to be cared for also. I will keep you and Michael in my prayers.

    Lee

    Comment by akentuckycreation — January 13, 2010 @ 9:25 pm | Reply

  14. Thank you for everything. Very useful

    Comment by โหลดเพลงmp3 — January 19, 2010 @ 5:25 am | Reply

  15. Great writing you did in this post, Denise! You even brought in the humor. Sorry that it was so difficult to get the sleep you needed, though.

    Comment by JoanieD — January 21, 2010 @ 3:05 pm | Reply

  16. The best information but i like

    Comment by โหลดเพลงฟรี — March 7, 2010 @ 12:40 am | Reply

  17. Denise, I don’t know how long you continue to read comments on your posts, but I NOW have reason to weigh in on this one! Having recently had a stint in the UK Med Center myself with Jack, I can TOTALLY RELATE! I arrived in the ER between 9:00 and 9:30P.M. after driving an hour and a half to get there. I sat in the waiting room for an hour waiting for Jack’s ambulance to arrive, because he was coming an hour and a half from the opposite direction. After they took me back to his room, there were tests, tests, and more tests, doctors, doctors, and more doctors, and nurses, nurses, and more nurses. Sometime between 11:00 and midnight, we were told he was being admitted. About 30 minutes or so until he was in a room, right? WRONG! We spent the ENTIRE NIGHT — until 5:30 the next morning — in the ER! They were so kind as to turn out the lights for us! I was sitting in one of those God-awful straight-backed chairs you described ATTEMPTING to catch 40 winks! Because it was hotter than blazes outside when I left my house, I was wearing sandals — alhtough I DID have the foresight to change out of my shorts into long pants. My feet were FREEZING! Therefore, I COULD NOT get warm! The nurse had said she’d get me a pair of socks, but she forgot! (She also forgot about the turkey sandwich she’d promised me, too, but we won’t go there!). I finally went out and snagged a couple of blankets off their rack in the hallway and wrapped up in those TRYING to get warm! At one point, I was sure we MUST be sitting in the morgue, because it was SO COLD! When they FINALLY took us to Jack’s room at 5:30A.M. I was overjoyed to see a loveseat that let out into a bed! After all the initial “we’re admitting your husband, so we need to ask you a gazillion questions,” I quickly figured out how to convert that loveseat into a bed and took full advantage of it! I was never so grateful for anything in my life! One of the nurses FINALLY gave me a pair of socks. I put those socks on, covered up with my two little (and I DO mean little) blankets and went off to la la land until about 8:00A.M!

    Comment by Cynthia Jones — June 22, 2010 @ 9:05 pm | Reply


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