Notes from the Inner Labyrinth of Caregiving March 26

Notes from the Inner Labyrinth of Caregiving.

                                   March 26, 2019

       Finally, it is a sunny day in south Minneapolis. The impassable snow banks are Gone and the alley is damp, free of

the ice ruts that made life impossible.

I do my ordinary thing in the morning. Feed the cats and then I get up very late. It’s how I cope. Deep rest late into the morning. I make coffee and have some kind of breakfast.

It is a sunny day in south Minneapolis after the longest cruelest winter. But that is almost forgotten. My rear view mirror was broken off two weeks ago as I tried to navigate the ruts in the alley. So I try not to look back and just look forward, but looking either way is hard.

Looking back I see that icy drive to HCMC on February 8^th.
You haven’t been home since, but despite all these setbacks you orchestrate and plan our garden. The Gurney garden order is on its way. I make notes and hope I can make it as beautiful as you see it as you are on 2 liters of oxygen in your wheelchair at the nursing home.

Looking ahead I wonder. I asked one doctor today what your prognosis was and is. He said for this one thing you could last a while. But then there is that other condition and the other and there were labs today.

Earlier this afternoon I got to the nursing home in time to talk to the nurse and gather up the notes. I joked with nurse that I have a nursing license. Well, let’s be specific about this. I have an “Artistic” nursing license that gives me the ability to draw in All Kinds of Medical Situations. And I do. Nurse Nita can deal with Medical Crisis and still kick up her heels and Dance!

You looked good in the black vest I brought you, but you were agitated and rocking back and forth in pain. My heart broke. Again. Feeling helpless.

I wheeled you out to the lobby and soon our driver came. A guy with gold watches loaded you up and I listened to the music playing all the way to HCMC. Groups from the 70’s. I felt the rhythm. We got to the appointment early. I went to get coffee and a lemon poppyseed muffin. I saw a woman I’d met a week ago when there was a medical crisis in the lobby. I read her the essay about that in which she is mentioned. When I am there again I will give her a copy. Then I saw Wenda and gave her a bill related to my work at the hospital. That is a long story.

I made it back up to the Pain Clinic and finally you were called in. We switched oxygen lines and I made things as pleasant as I could. That’s what I do. Smooth things out draw and take notes. We were running late for our second appointment, but finally the doctor came and it was a good visit. There in the Pain Clinic when you were in such pain after all.

We made it to the Pulmonary Clinic and there we were waiting again. We conferred with the doctor. I took notes and drew. He made adjustments to your meds cycle.

Somewhere along the way. Maybe it was when I spoke to the doctor about your prognosis that I felt the wheels of caregiving shift. Maybe it was getting on My Chart. Maybe it was the way you always ground me. Maybe it was just the realization that you are tired of all this and are so worn down. Maybe it was the realization that maybe in a year I won’t have you after all. There will be no more labs, no more shaking with pain, no more transport rides to the hospital and most certainly no more harrowing ambulance rides. No more appointments.

The wheels of change shifted into place. I looked at how tired with pain you are. I felt so proud I finally got My Chart in place. I looked over your sheets of labs. And along the way I sighed. Only the Chopin piano piece playing can convey these feelings.

I rushed you to the Lab, but did not sign you in. I thought you were signed in. I rushed back to get my stuff and ended up drawing and talking to the nurse. It was a significant moment.

He told me how he felt “the song again.”as a nurse.

I ran back to the Lab area and you were waiting. There were several eternities this afternoon and waiting to check you into the Lab was one. I got kind of pissy, but was always kind and loving with the woman I know so well and have drawn.

Blood Draw Area…… More Labs for You

We got back to the nursing home. You had supper. I wheeled you back to your room and took your meds. Wonderful Hafsa looked after you as always

The soothing music is playing now. I had a glass of Italian wine. It goes down easy after all. Looking back on the day I see that we made it. I know now I will look back on this time with a rueful poignant feeling remembering how sad music played almost every time I drove to see you at the nursing home.

I will remember how earlier the driver and I talked about old Minneapolis and what has vanished. I will remember how when we got back I wheeled you right into the bathroom and got you to dinner on time. You had two bowls of chili. Your appetite is always good.  I will remember How I rolled you back to the room How I wiped you butt. How in a year I might not be able to do that.  How I laid there listening to music and then how I left after kissing you good bye. How you said you just wanted to get through all this. How I left. How I came home and walked on the dry pavement that I swept free of traction grit earlier today. How the snow is gone. How the cats welcomed me. How you are not here. How things change. How I am here now remembering the day and you are not here.

It was a sunny day in south Minneapolis but you are not here.