April 15th 2003 & 2016

April 15th 2003

Surprise Surprise!  And it is not a good one.  I am leaving my hospital today. All they say that I really need is the speech therapy technique for my swallow.  And they really want me getting that every day.  I can walk ok.  They had me practice stairs.  I can reach to wash all my bits and bobs by myself.  So I don’t need to stay.  Other than Carole, my speech guru here at my hospital, there is only one person in the county who does the technique.  Fine.  But she is at a nursing home.  Really?  The rehabs around here only take stroke patients with more than one need.  And even if speech is a need, they don’t do the DPNS that might bring back my swallow. So, I am going to a nursing home.  I am going the very nice nursing home that is about a mile from my real home.  I am going to be a patient at the nursing home where my mom’s dear friend and mentor lives.  She had a couple of bad strokes and can’t speak.  She lives there.  And I will live there too, for now.

 

Calendar

 

 

 

It takes a massive delivery cart to load up all the gifts I have gotten in the past 11 days.  The plants alone, number 10.  It takes a while to pack up the cart, a bag of some clothes has to be coordinated my home, plans for my transfer have to be written and there is a mountain of paperwork to be signed, sealed and delivered.  I don’t want to leave my roommate.  My room is sunny.  I need my nurses.  The atrium is pretty at night with twinkle lights.  Farmer Ken is here.  I am safe here.  Inside my head, it is screaming again.  “Please, please, let me stay.  I need to be here.  When another stroke comes, I want to be right here where you know what to do.  I have friends here.  Please, I beg of you… I am not ready.  I can’t do this.”  But out of my mouth comes my polite good byes and questions like “Did you get my slippers from next to the bed?  Do we need bubble wrap on the crystal vases?”  Really?

I ride across town, over streets I have driven a million times.  I drive past the side street for my school.  I pass my favorite restaurant.  Mom and I have gone there at least once a month since I was 6 and we moved here.  I always order the Bacon Cheeseburger with Fries and Onion Rings for supper and the Peanut Butter Pie for dessert.  Sometimes, I can’t finish the fries.  But I always finish the Peanut Butter Pie.

We pass the supermarket I shop at and head down the road further into the West Side.  The snow has melted.  The air is still cold but the sun is starting to get warm in the middle of the day.  The complex with the nursing home is huge.  There is a big gym and school out front and there is short term care behind that and then all the way at the end of the drive, in the woods, is my building.  I start shaking with cold.  But no one notices.  The shaking, freezing terror is settling deep into my bones.  I follow staff.  Up the elevator we go.  One floor is the locked floor for patients with Alzheimer’s.  The doors open and there is a glass wall.  The door in the wall opens to a huge terrace, I think.  As we turn to check in at the nurses station, something outside on the terrace catches my eye.  It is not something, it is someone.  A patient.  Maybe I can go out there too.  I meet nurses at the desk.

They take me back down another hallway and we go in a big brick room, no windows  with a walk in tub at the end.  I never knew there was such a thing.  The walk in tub is also a scale.  They want a weight check.  I open the side door of the tub and sit on the seat.  22 pounds.  I can’t believe it.  In 11 days, I have lost 22 pounds.  And I smile.  Freakshow, I know.  So there is a benefit to this stroke thing.  It is a very successful diet.  And I am not even hungry.  Wow.   No one smiles or laughs as I am saying this.  Awkward!

Now we can get me to my new room.  Out that door and back down the hall, pass the nurses and straight and down a long corridor.  I don’t see anyone in the halls and peeking in doors as we walk past, I can’t see anyone.   Almost to the end, on the right is my room.  The rooms are all doubles.  But mine will have only me.  They aren’t having me share with a resident.  Why?  I am 30 and the patients are all over 70 right now.  They think it is best.  The room has brick walls.  There are big windows looking into the woods and up a small hill.   The sun does not come in my room here.  Very dark and I am very cold.  I have my own ½ bath with sink and toilet.  There are two beds, a desk like table, two bureaus and two big arm chairs.  There is a TV on top of one bureau.  I turn it on and leave it on.

On the wall above the desk is a calendar.  I use it. The DPNS will not start until tomorrow.  And I will have two sessions a day on weekdays.  Nothing will happen on the weekend.   What will I do the other 23 hours of the day?  It is the afternoon.  My family heads home.   The day shift heads home.  The residents/patients are getting ready for supper. At the end of the hall beyond my room, is a big open community room.  Residents who are able, eat supper there.  It is Passover and the home is keeping kosher.  It actually smells good to me, familiar herbs and onion.  But, of course, there are no food orders for me.  So I don’t go to the community room.  Why would I?  I don’t need regular nursing care, so staff doesn’t come in much.  The halls are pretty empty, so I sit alone, scared to leave the room.  Before supper time, a nurse’s aide checks in with me.  Am I settling in ok?  Do I need anything?  Do I want to take a shower?  She goes to leave, and I compute what she has just said.

I call to her loudly, out loud, “YES.”    I haven’t had a shower since the morning of April 4th.  They didn’t offer at the hospital.  And I didn’t wonder about that.  My bathroom here has only sink and toilet.  So where is this shower?  I don’t think she meant now, for a shower.  But I did.  Realizing I wasn’t going to need supper and maybe hearing the urgency in my voice and possibly seeing how out of place my unwrinkled face looked, they nice aide said she’d be right back and I could have my shower.

She settles her other patients, checks with the nurses about my case, gets a key, a towel, some medical supplies and me.  I disconnect from my machines and follow her closely back down the corridor to the nurses station.  We don’t turn right towards the elevators and terrace, but instead keep straight.  Three doors down on the right, she stops and uses her key. It is the room with the tub scale.  There is a curtain hanging on the right side of the room, just inside the door.  Behind the curtain is a room, long and deep.  First there are two benches with hooks above them. The nice aide has me down my things like towels and soap and washcloth.  Then she puts down the medical supplies.  She shows me a big gauze square that has plastic on one side.  Gently she puts that over my peg site.  She shows me how to tape it and tells me that water shouldn’t get in the wound, but to keep an eye on it while I shower.  She tells me that she will wait outside the shower area, on a chair near the tub scale.  If I need her I can call, but I should be fine and she wants me to have privacy.  Knowing  that  she is the one who offered the shower to me and got the key, and believing that she is sitting just outside, I am safe.

The rest of the long room is all showers. I take off the soft sweatpants that I got from home today.  The flannel shirt is way too big now, I notice.  The clothes from home were a comfort.  They have cat and dog hair on them.  Special, blessed garments.  But now I want them off.  The tiled floor in clean and has two drains in it.  There are three shower heads, one on the left wall, one on the right wall and one on the rear wall.  I reach out to turn on the shower head to my right and adjust the heat dial towards hot.  In a second I see steam and head towards the water.  I lead with my right leg and then screech, out loud.  Nice Aide comes to me.  She takes my left hand in hers and touches the water stream.  With the left had I can sense the temperature.  I guess I can’t feel that real well with my right.  My left hand, and hers, says the water should be turned down a bit.  All set now.  She heads back out.  And I head in.  Now I turn on the left shower head.  I check the heat with my left hand and stand in between the heads.  The water is hitting the sides of my legs. The warm water rushes over me. (I feel the spit in my mouth, but I can just spit down towards the drain.  No need for the suction here.  No one to watch me struggle.  No one to pity me.  )

The warmth comes into my bones a bit, pushing back the aching freezing terror.  I look at my PEG tube and the water is nowhere near it.  Now I look at the back wall of the room.  The third shower head should be on too.  Again, I turn the dial to hot, and test it with my right hand.  I am getting the hang of this now.  I turn my back to the rear stream and slowly move back under the water.  I let the water just stream down my back and legs.  I am not ready for the water to actually hit my stomach.  But the warm water and heat caresses me, and I stand for a long time.  I am actually getting sleepy and feel myself relax.  I shut my eyes and feel cozy.  The nice aide lets me rest in there for a long time.  After a time, she asks if I need help with the soap or shampoo.  I snap back to the present and remember that I have more to do here.  I do suds up and I relish the smell of the soaps and the bubbles. My skin is warm and clean under my own touch.  When the last soap bubbles disappear down the drain on the floor, I turn off the water and dry off.  The air in the room is warm and soft.   As she opens the door, the cold medical air of the home hits my face.  Oh yes.  Here I am again.  I start shaking inside again with terror.  But nice aide, as if she knew, tells me right then, that whenever she is on shift and has time, she will let me take a shower.  Other residents need supervision in the shower and only get them at certain days and times.  But I, I can have as many as I want.  She trusts I am safe in the shower.  And with that, I feel a bit better.  There is something to look forward to.  She takes me to my room. I am so grateful for her time and her gift to me.

 

April 15th 2016.

This morning, on my first cup of coffee, I looked out the window into the predawn quiet moment.  The big bunny was back again.  I can barely make her out down under the bird feeder.  She is so still and it is not light yet.  But she raises her head, that nod making me know she is there.  And I raise my coffee.  Both of us have a quiet morning routine before our families arise.  And I am blessed that she was there again today to start my day with me.

At school we celebrated our fabulous student teacher on her last day.  The kids made her a card and all signed it, without me or Miss knowing about it.  I got her a poetry anthology and had all the kids sign it without Miss knowing. I made a cake with Henry Sugarhouse Buttercream frosting.  Of course I baked.  That’s what I do.  I have to give the kids the credit.  I was so wrapped up in sad feelings of her leaving and excitement about the April vacation,that I spaced out about having a sweet treat to say goodbye.  Thank God that my kids are who they are and told me to make one for her.  After all, what is a party without cake?  And so we had cake and hugs and tears.  I am not good at goodbyes.  I hope Miss stays in touch.  Maybe I can help her down the road.  Maybe she will want just to call and vent about HER classroom soon. Maybe.

Even saying goodbye to the kids for a week of vacation is tough for me. (All of our behaviors show that school is a safe place for us.  It is a comforting routine.  And even as we Love, Love vacation, we are nervous about the unknown.)  I worry about the kids.  I worry a lot.  But two things help.

  1. My first year of teaching, I told my mom how scared I was for some of my students.  She told me, “you have no idea, how small a thing it takes to save a child.”  Those words echo in my head and come out my mouth a lot.  I know that my impact on my students, matters.
  2. One of my dearest crochet friends told me what she does when she worries about her loved ones.  She imagines there is a big trampoline in her backyard.  And she puts her loved one on the trampoline, in her mind.  And she bounces them up to God.  Once they are in God’s hands, she can let go.

The sun shines after school and friends of mine, whose children are friends of my son’s, head to the park.  I sit on the warm playground and chat with friends.  Cool breezes are no match for warm sun.  Spring is here.  Giggles galore explode from our children.  Spring is here.  I want to get home to Tim and the 4 leggeds. I can’t wait to give him a hug and a cake I made for him.   We have a whole week together.  What a gift!

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